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Treatment of cerebral palsy is possible at Trishla Foundation, the best center for cerebral palsy diagnosis, cerebral palsy therapy, cerebral palsy surgery and cerebral palsy treatment in India. It also become a No.1 NGO for cerebral palsy treatment in India.

My name is Albertson Denim, I am making awareness about cerebral palsy and recently join Trishla Foundation at initial level to help children affected with CP.

Cerebral palsy is a condition occurs after some damages in the brain before, during and after the birth of an infant. The complete treatment of cerebral palsy is not possible but it can manage by after some therapy and surgery treatment. 1000 birth of an infant 2 to 3 children affected with cerebral palsy. There are various causes of cerebral palsy for example infections during pregnancy, severe untreated jaundice, asphyxiation, brain injury during or shortly after birth, brain hemorrhage before birth, infections after birth, lack of oxygen, Genetic causes etc. It also classified in various types but spastic cerebral palsy is a most common type of cerebral palsy in which 70 to 80% child affected with spastic cerebral palsy. It also classified into different four parts depending upon the affected limb of cerebral palsy for example hemiplegia. diplegia, quadriplegic, monoplegic etc.

The life expectancy of cerebral palsy is between 30 and 70 years, depending on the severity of the condition. In general, a child with a mild case of CP usually lives longer than a child with mobility and intellectual limitations. In most of the cases, we found (according to Trishla Foundation) cerebral palsy life can be improved after cerebral palsy diagnosis, cerebral palsy therapy, and cerebral palsy surgery treatment. There are lots of children affected by cerebral palsy come at Trishla Foundation and get a new life. Now, they are able to do their task with taking help of others. These patients or cerebral palsy children passing a message “No More Cerebral Palsy” across the world.

If you know any child affected with cerebral palsy, limb deformity, orthopedic and other physical disability problems then feel free to contact Dr. Jitendra Kumar Jain at Trishla Foundation, No.1 NGO for cerebral palsy treatment in India.

My name is Albertson Denim, I am making awareness about cerebral palsy and recently join Trishla Foundation at initial level to help children affected with CP.

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Hi,

I just wanted to pop a post up for anyone who suffers from a disability that affects their hand/finger function. There’s a company called Active Hands that manufactures and distributes a variety of gripping aids that are specifically designed for people who have trouble holding onto things such as: gym apparatus, weights, tools, sports equipment, handlebars etc. They’re both comfortable and durable, and are attached round the wrist using a combination of loops and velcro, meaning they can be done up with ease even if you have no finger movement at all. Rob, the guy behind Active Hands, has also made a disability gym workout video, where he shows how to use all the products and the kinds of exercises you can do with them; which can be found on the Active Hands homepage.

I’m a quadriplegic myself, having suffered a C5 spinal injury whilst driving in 2005. This has resulted in me having limited triceps and no finger function, so I rely on my Active Hands products every time I go to the gym or need to keep a firm grip on something. They’ve given me freedom, have helped me build up my strength and contributed to me being able to live an independent life. I’ve used these products for years and now work for Active Hands to help promote them and make as many people as possible aware of their benefits.

I’ll leave a link to the website at the bottom, where you can find all the gripping products they manufacture as well as an ever-expanding selection of new disability products that are created by others but distributed by Active Hands. So if you or someone you know has issues with anything from gripping weights to tying shoelaces, opening packages to holding a mobile phone; there’s a good chance Active Hands may have the ideal solution!

http://www.activehands.com/

Hi,

I am a mother to a 9 year old child with Cerebral Palsy, he is non ambulatory and attends a special needs school in NY. It has been hard for the family but we are holding it together and thankful that he is such a happy boy that loves playing with his brother and older sister. I recently was diagnosed with Generalized anxiety disorder, I am working on my master in social work and decided to conduct research in the topic area. If any of you could take 5 minutes of your time and complete this survey for me i would really appreciate it . I am trying to generate interest in the topic so more clinics can offer services to both the children and the caretakers in one accessible location.
Please click on this link

https://freeonlinesurveys.com/s/qNoLp3XR

Thank you

If you have any questions you would like to ask me please feel free to contact me.

mother of 3 child with cerebral palsy, have a master’s in education working on my Master’sin social work. happily married for 15 years

It’s so scary when your child hurts…you Know, I think there are very few people who trust the doctors. And very few physicians there are who can be trusted themselves. http://bigpaperwriter.com/blog/autism-essay-reasons-symptoms-characteristics But children with autism should not feel other. And our society is not used to it…

Hi ladies and gents, hope all is well!…Would really appreciate your support!

I’m trying to get my story out there…I believe I can help and inspire many people…Would love to make a difference in people’s lives!

I was born with Cerebral Palsy and for most of my life I couldn’t utilise my limbs or hardly talk; thank god, I’m improving by the day…My goal is to walk one day and become a motivational speaker.

This is my first official YouTube video, I’ll be posting weekly by months end :)…In the future, I’ll be addressing the day-day challenges I face with Cerebral Palsy as well as topics such as goals, anxiety, depression, bullying and the importance of being yourself, believing in yourself and being true to who you are!

Watch the video, let me know what you think…Help me make a difference! Feel free to Share and Subscribe.

YouTube video

Much appreciated,

Moustie

Hi let me start by saying my name is Holly I’m 27 I was born at 32 weeks because of my placenta detaching causing a lack of oxygen in turn causing my cp. My mom was told when I was like 4 that I have spastic diplegia. All my life I’ve noticed these small couple second long jerking motions I’ve gotten. I never thought anything of them because no one else seems to notice them but me. Fast forward to the last few years. They have become far more frequent they are happening many times a day sometimes up to 15 times a day. They don’t last very long the longest I’ve ever noticed it lasting I think is about 30 seconds start to finish. Sometimes they seem to happen in clusters. Like 5 times in a like a an hour or two span. I can see,hear and feel what’s happening but can’t talk or do anything about it. I also get this weird feeling just before they happen. I saw a neurologist for the first time since begin diagnosed as a kid after being refered by a cp specialist. They did a sleep deprived eeg. And an mri. Along with blood work. I go back on Aug 19th for the results. In the mean time. I went back to the cp specialist and he was looking at something the neurologist sent him and he said something about dyskinetic tremors. I’m wondering if anyone else had had a similar experience.

Hi, my name is Stephen Travers, I am 30 years old and I am looking for my little Brother, Martin Travers (unsure of his new surname), he is roughly 26-28 Years old, has mild Cerebral Palsy, was born to father Stephen Travers in Kilmarnock, given up to Foster Parents at an early age, if you think you know Martin, please notify him that his brother is trying to find him, and let him choose what to do. Contact me for my contact info, I will never ask you for Martins info, if you would like more information from me before you decide to contact Martin, thats fine, feel free to ask. Thank you for any help you are able to provide

Looking for my little brother, Martin Travers (unsure of his new surname), he is roughly 26-28 Years old, was born to father Stephen Travers in Kilmarnock, given up to Foster Parents at an early age, if you think you know Martin, please notify him that his brother is trying to find him, and let him choose what to do. Contact me for my contact info, I will never ask you for Martins info

Thank you very much for your reply and it’s good to hear from someone who has been there. It looks like the worry regarding CP was unfounded, though she does have hyper mobility in hips, knees and feet. She went through physio and is now walking. Astonishingly she could walk unaided before going from lying to sitting. That was a first for her physio team!! Anyway, thanks again – i just wanted to respond as you had taken the time to get in touch

Hi,

It’s interesting, because as you said, CP is usually diagnosed when an individual is very young, when their movement is noticeably different from ‘average’ or has the characteristics of CP.

I would say it MIGHT be missed though, especially if it is a very mild case. I suppose anything can be missed or misdiagnosed!

Have you ever brought up any of you thoughts on the possibility of CP with any of the doctors?

If you are curious and it is in your head, I would see no problem with bringing it up as a possible avenue of exploration!

Good luck!
Holly.

24 year old blogger.
Cerebral Palsy Diplegia affecting both legs and left arm (slightly).

Hello,

I hope your finger healed well!

From my own experience, I do not think my pain tolerance is higher than anyone without CP. But I would also say that everyone is different!

Do you think that you would be in a lot more pain if you had injured yourself on the other side of your body?

It’s certainly an interesting premise anyway!

Holly.

24 year old blogger.
Cerebral Palsy Diplegia affecting both legs and left arm (slightly).

Hi Fiona,

I’m 24 and have cerebral palsy. I cannot advise you from a parent’s perspective, but I hope you can find at least some of my input helpful!

I think you posted this over a year ago now, so I hope you daughter is well and healthy. As I hope you are too!

Diagnosis of CP often doesn’t occur until the child becomes a lot more mobile I think. For example, I was only diagnosed with CP after a while of shuffling around using only my arms and with my legs dragging behind me.
Even after my parents expressed some concern, I think it still took a little while for a ‘proper’ diagnosis to be made. I think doctors just want to be sure that it’s not just late development etc.

IF you have found that your daughter does indeed have a physical disability, you will likely be put though all the necessary physiotherapy to help your daughter gain the most mobilty she can.

Unfortunately, you might have a bit of a fight on your hands with regards to ensuring that she gets all the attention/help she needs. My parents had to persevere through a lot and keep fighting for me to get what I needed when I was very young, but hopefully things have changed for the better now!

The main thing I will say to you is to give yourself time to adjust and accept that your daughter may have some added difficulties. You sound like you are an incredibly caring and attentive mother and that is all she needs. 😀

If you accept disability and raise your daughter with a positive and resilient attitude, I’m sure she will grow into a very confident and successful young woman.

Hope that helps, take care,
Holly.

24 year old blogger.
Cerebral Palsy Diplegia affecting both legs and left arm (slightly).

Hi Zachary,

I appreciate that you wrote this post over 3 years ago (!) now and I hope that your situation and feelings have improved since this time.

I am 24 years old and have mild-ish cerebral palsy that affects both my legs and my left arm. I fall over and often nearly lose my balance a fair amount. I cannot walk or stand for long periods and find it fairly difficult to get around if the ground is uneven or there are many stairs.

I have graduated from University with both a BA (Hons) and a MA degree.

As others have said, you seem like an incredibly intelligent person and can obviously communicate very well.

I agree with the aforementioned in that keeping yourself stretched out and strong with regular exercise is important (I should do it more myself!)
I also agree that you have to keep trying with everyday tasks until you can find a way to get things done (if possible).
For example, plastic cups might be better to use if you are worried about dropping it on the floor when you get yourself a drink.

As long as you get there in the end, it doesn’t matter what means you use. I have been known to shuffle down stairs on my bum if there isn’t a banister. 🙂

Also, do you have any equipment that might be available to you to help yourself gain more independence?
I have a board that goes over the bathtub so I can get in and out by myself without balancing and lifting my legs up high.

The main point is to keep persevering and practicing, as well as exploiting any means that might help you along the way!

As also mentioned by another here, it is very difficult to know how to advise you when we don’t know too much about your personal ability levels, I hope you have found this advice at least a little bit helpful anyway!

Again, you have great eloquence and undoubtedly have a great future ahead of you.

If you want to chat some more about things, feel free to email me on: hs174@uni.brighton.ac.uk

Take care,
Holly.

24 year old blogger.
Cerebral Palsy Diplegia affecting both legs and left arm (slightly).

Hi Tom,

I am new to this forum so I am only now responding to this. I hope things with your brother have since improved.
It seemed like your two issues were a) your brother’s lifestyle and happiness and b) how CP treatment has advanced since the 80s.

As for your brother’s mental and emotional well-being it sounds great! It’s wonderful that he has supportive brothers and an active life with caregivers and family. I understand that you may not have seen his CP as limiting when he was younger, which can be good and bad. It should be recognized that many symptoms and conditions caused by CP put people with CP at a higher risk of depression. So it is important that he feels loved and active. Stress can trigger fatigue and other CP symptoms. Maybe even the stress of his decline in health. Please keep up his active life, and please ask him about and remain interested in his CP and his personal life in a compassionate, friendly, and empathetic way.

My understanding is that unfortunately, however mildly or severely, CP complications do get worse over time. From what I understand from my parents, it was treated coldly, permanently, indifferently, and incorrectly (as a muscular condition and not a neuromuscular one) in the ’80s. It is supposedly non-progressive (though maladaption can occur in the brain leading to problems and though symptoms can worsen, most likely rewiring the brain), and was especially treated as such in the ’80s, with a shrug and minimal intervention. Although it affects 17 million worldwide and is not expected to decline in numbers, research is not done on adults and treatment is limited. Personally, as a 31 year old with mild CP affecting my right side, I can tell you that some symptoms do get worse, new ones arise, and ones that were around as a child may become more evident and impactful for adults. For myself, this has meant increased neuropathy, hip problems, fatigue, vision problems, and overuse issues on my unaffected side. It is hard to find doctors to help, and I have been turned down by my physical therapist of twenty years since she only specializes in pediatric treatment. I am now getting therapeutic massage, and it has greatly improved my quality of life. Generally, medical professionals will treat the symptoms, and not the CP, which makes sense because CP is an umbrella term that describes the initial trauma, not what the person is going through (so it is essentially a past event). I think the trick is to properly recognize the symptoms and to find a good professional, particularly someone who treats CP like it’s the 21st century and one who has experience with neuromuscular disorders (even better if those disorders were since birth). I am confident that your brother can improve if he is treated properly. Physical therapy, massage, and occupational therapy can go a long way if it is treated in a neuromuscular, musculoskeletal, and developmental way, etc., and not just a muscular way. I have seen symptoms worsen and I have worked to get them better. Assuming he is spastic, his weakened muscles are also constantly contracting and in use, even while sitting down, so it is important to get him moving and stretching however possible, and try to relax them to allow a break.

I would advise you to keep a smile on his face, and also to help in anyway you can, even if that’s ten minutes a day of stretching his spastic muscles. Seek multiple professional opinions and stress that you are looking for someone with experience with and knowledge of CP. If it’s not working, move on and try someone/thing new but also have a lot of patience. Get a variety of treatments and make sure he is active and his muscles loose, working with what he can do. As Stephen Hawking said, “My advice to other disabled people would be, concentrate on things your disability doesn’t prevent you doing well, and don’t regret the things it interferes with. Don’t be disabled in spirit as well as physically”.

Best of luck!
Rachel

Living in Cyprus but rehabilitating in Klimkovice
In March of 2013, the life of Mr. Georgios (58) was turned upside down by cerebrovascular stroke. He became paralysed in one half of his body, lost the ability to speak, and his short-term memory was impaired. He commenced rehabilitation immediately after his hospital stay, but the results were barely noticeable despite the ongoing support and help from all the family. By a mere chance the wife of Mr. Georgios, Eleni, who is a restaurant manager in Cyprus, learnt from her new Czech waitress that the Czech spa of Klimkovice has developed a new rehabilitation method which might help her husband. Not hesitating for a second, they Skyped the neurorehabilitation coordinator in Klimkovice, and began their first stay in November.
Eleni recalls that the therapy was initially rather demanding on her husband. He exercised for two hours every day and followed that up with other supportive procedures. Yet after the first week, Georgios started to regain his strength noticeably and became more engaged in the exercise. The atrophied musculature became operational and firmed up. Apart from this, the husband and wife learnt an important lesson in Klimkovice. Eleni realised that she would have to let her husband work on his own. The continuous assistance prevented Georgios from undertaking the necessary autonomous movement and decision-making. Even though he had not had much success and had struggled initially, after three weeks of therapy he was able to brush his teeth, dress himself and eat on his own. The results of the first visit were so convincing to the married couple that they would return to Klimkovice in less than a year.
Early this year, Georgios and Eleni came back and decided to practise walking and exercise his still impaired leg. Using a special neurostimulator that straps onto the leg and provides great assistance, Georgios has improved fast and is able to perform more and more demanding activities day by day.
Apart from his physique, they have however also decided, based on a recommendation by Klimkovice physicians, to focus on his communication issues. After the cerebral stroke, Georgios lost the ability to speak, forgot how to write and count, and was not able to identify common objects. The Klimkovice speech therapists approached Georgios’ therapy professionally. “They even look up Greek words and then practise them with my husband,” says Eleni.
“I can observe my husband improving every day, not just his motor skills but also his communication with me. He recognises the objects around him. But the most important thing for me is – he has begun to laugh again, he’s more relaxed! The essential thing is that when something like this happens to you, you can never compare your abilities and your condition to the ones you had before this illness. One has to appreciate every single little thing, every minor improvement or progress. For me, my husband has become my number one priority. I’m here for him every day. You must never give up and you have to have faith. And I believe we can make it over time. That my husband will be able to enjoy quality life again,” says Eleni. “I appreciate the complex approach of the professionals in Klimkovice, the patience of the therapists and the personal attitude towards us. This is why we keep coming back despite the vast distance that separates us.”

Sanatoria Klimkovice neurorehabilitation clinic is located in the Czech Republic, only 20 minutes away from Ostrava Airport, which provides regular flights to London. Alternatively, airports in Brno, Prague, Katowice, Bratislava and Vienna are all within driving distance.

Despite prognoses, Nikolka is already walking

Nikolka was born prematurely in the 33rd week of pregnancy. From the very beginning she suffered from a large number of health problems. The initial prognoses, stating that Nikolka would be immobile all her life, have managed to be overcome. How? By early rehabilitation and neurorehabilitation care in Sanatoria Klimkovice, an establishment available to children over 1 year of age specialised in this kind of treatment.

“One day during my pregnancy I stopped feeling the baby moving. We rushed to the hospital in Nový Ji?ín, but the doctors could only hear a fading heartbeat. That is why I had a Caesarean section. Nikolka was intubated right after the birth and could not be with me. I was discharged from the hospital three days later, but my daughter had to stay there. I came there every other day with my breast milk. She was in a critical condition and the doctors didn’t give her much chance,” remembers her mum, Michaela Bartlová.

What does a mother think at times like this?
A feeling of huge disappointment and fear, every time the phone rings. Both parents were very much looking forward to Nikolka being born and suddenly they were facing the fact that that there was no certainty they would see her again in a few hours. “We realised even more how happy we were for already having two healthy sons.”

Nikolka won her battle for life there in the hospital. What happened next?
After a week they put a little container on her forehead from which they performed a daily cerebrospinal fluid puncture in order to stop her little head from growing. Otherwise the fluid would cover all of it and her heart would stop beating. The doctors were hoping that after several months it would begin to circulate itself. Unfortunately, the damage was of such a large scope that it was not possible. Therefore, they had to provide her with a little shunt – a valve with a tube fixed to her ear, which ran via her throat to her abdominal wall. The valve regulates the pressure in her head, and the cerebrospinal fluid flows to her tummy as needed. And we were unlucky again, Nikolka has her thirteenth shunt now. Her body was not capable of accepting the previous ones. She suffered from viral infections, abdominal wall inflammations and in the end even from meningitis. We spent the whole year fighting for her life in the hospital. She was born on the thirteenth and the thirteenth shunt was accepted by her body, so thirteen is her lucky number.

What were the medical prognoses?
Pessimistic. They told us Nikolka would be a lying-down person stuck in her own world. That her brain is misshaped in consequence of all that happened, she has no brain cells capable of learning new perception. I don’t care about what people say, I’m a type of person who never gives up if there are still things to try. That’s why we started raising money for rehabilitation. Marie Jane?ková, the mayor of our village Rybí, helped us a lot. She founded a bottle cap collection for us, and the community further supported us several times, which enabled us to take our 2-year-old Nikolka to Pieš?any for her first rehabilitation. And there we found out about Klimkovice and came here right away. We like it here very much, and we try to come as often as we can and as often as our financial situation allows.

Which therapies has she undertaken in Sanatoria Klimkovice?
She started with the RehaKlim programme. We exercised using Bobath therapy and Vojta’s therapy methods. Nikolka first learned how to roll onto her belly and then we helped her to sit down. Then we started KlimTherapy, a more demanding rehabilitation programme. Even though sometimes there are some tears when she learns, or she refuses to try, she exercises two and a half hours per day. The physiotherapists begin by warming up her muscles, and then she exercises in a so called astronaut’s costume.

Nikolka sits nicely in the wheelchair, she even chatters. Has she thus been making progress that nobody had ever hoped for?
I did hope. We started with the rehabilitation when Nikolka was two years old. Now she is four and a half.
Not only does she sit in the wheelchair, but she also learned how to walk, even though we need to use the wheelchair because her walk isn’t perfect and she can’t walk very far. But she has also started talking. The doctors say that it is the consequence of the rehabilitation, because thanks to that her brain is able to regenerate faster. During her last stay in the spa she also went through speech therapy with orofacial stimulation. She even started practising saying the L and the R. We know she will never be completely healthy and she will never live a full life. Although we hope we can give her the greatest quality of life as we can by means of the rehabilitation therapies.

Have you got an idea about what comes next?
Well, we are going to continue exercising and attend the rehabilitation programme as much as our financial situation allows. Nikolka is self-sufficient to the extent of about fifty per cent, which, taking the prognoses into account, is a great success. But it means a life-long job for us. One day when we start feeling weak, we would be glad if she could live in a day care centre where she could be among people like herself and find some friends. Hopefully she will have learned some new skills by then.

Every child is unique and has its individual mixture of problems. Not only do the neurorehabilitation specialists from Klimkovice train the children’s bodies, but above all also their brains. A significant part of the neurorehabilitation programme is multisensoric stimulation on Snoezelens, ergotherapy, speech therapy, canistherapy and other treatment.
There are also modern rehabilitation appliances and equipment of great help used at Spa Klimkovice for the rehabilitation of children suffering from cerebral palsy and other brain diseases. This is why Nikolka was able to exercise on the new and sophisticated AKKA platform. She enjoyed it, because the apparatus enables her to do things the way she wants and decides. AKKA platform cost CZK 161,000, of which CZK 100,000 was donated by the ?EZ Foundation. “The apparatus enables working with children whose motor activity is disabled. It is a mobile platform by means of which the patient is seated in a wheelchair. They then use a special switch in order to control the movement of the platform,” explains the Head of Physiotherapy, Romana Holá?ová.

Sanatoria Klimkovice neurorehabilitation clinic is located in the Czech Republic, only 20 minutes away from Ostrava Airport, which provides regular flights to London. Alternatively, airports in Brno, Prague, Katowice, Bratislava and Vienna are all within driving distance.

Hi, my name is Vendula and I’m representing Sanatoria Klimkovice, a neurorehabilitation clinic for children with cerebral palsy based in the Czech Republic. Our aim is to raise awareness of the possibility of treatment abroad for cerebral palsy and we are looking to expand our services to include the UK market. Unlike private rehabilitation in the UK, treatment in countries such as the Czech Republic is more affordable (usually about one third of the price) and of equal, if not superior quality.

To establish our reputation on the UK market, we would like to offer parents of children with CP a free initial medical consultation. We welcome self-paying international clients and we accept both self-referrals and referrals from health professionals. The special program includes treatment, accommodation and full board at our clinic. We offer an opportunity for a child patient to receive 50% discounted treatment. This offer is valid until the end of May 2016.

Sanatoria Klimkovice neurorehabilitation clinic is located only 20 minutes away from Ostrava Airport, which provides regular flights to London. Our team are happy to assist you with arranging transport to and from the airport, taking into consideration any special assistance needs.

If you’d like to know more about what we do and what results we achieve, please visit our website at http://www.neuro-klimkovice.co.uk or contact me at enquiries@sanklim.cz.

Sanatoria Klimkovice neurorehabilitation clinic is located in the Czech Republic, only 20 minutes away from Ostrava Airport, which provides regular flights to London. Alternatively, airports in Brno, Prague, Katowice, Bratislava and Vienna are all within driving distance.

Good afternoon!

I am representing the company Adeli+.
We successfully work with children and adults diagnosed with cerebral palsy for over 20 years. Our method is based on physiotherapy with the use of Adeli suit, which is nowadays named as one of the most successful treatments for cerebral palsy by international researchers and doctors. Although cerebral palsy can not be fully cured, 98% of our patients experience positive results of various magnitudes depending on initial conditions. More information can be found on http://www.adeli-suit.com

We are planning to open a clinic for cerebral palsy treatment with the use of Adeli method in the UK and currently are on the research stage. We also have some questions regarding the legal side of setting up such clinic in the UK.

If you can help us overcome these issues and accelerate the process, we would be very thankful.

Many thanks,
Kseniia

Hi there,

I’ve just found this forum as I’m mooching around on the internet looking for information and, as I generally find parents seem to know far more than doctors or social workers I thought I would ask my odd question here.
This may sound very silly but ……… is it at all possible for doctors to miss cerebral palsy in young children and for them not to be diagnosed until they are teenagers?

My son is thirteen and was diagnosed with autism at 5 and epilepsy at 6. I found out when he was ten that he’d been deprived of oxygen during the birth and then about a year and a half ago (when he was eleven) he started having terrible problems with fatigue and his legs seemed to give out on him (almost as if they were too weak to support his weight). He’s been seeing a great physio who told me that his muscle tone (control) is low and that his right hand side is weaker than his left, to the extent that he tilts to the right slightly when he walks and his shoulder blade is lower on the right than it is on the left.

He’s having some assessments done at Great Ormond Street later this year so I’ve been going through his entire medical history and early milestones etc so that all the info is in one place and easy to read for them. I’ve been looking up various things as I’ve made notes (problems with feeding and reflux as a baby, problems with weight bearing with his legs, not crawling etc), all of which were checked and dismissed as not being a problem at the time, but in each case something about cerebral palsy pops up. I know that lots of conditions have similar symptoms and I’m not getting into a flap about it all (we’ve dealt with a lot already over the years so I know that in terms of symptoms there’s not an awful lot more I can do at the minute) but it has got me thinking about whether it’s possible he was misdiagnosed? I’d always thought it was a condition that was diagnosed at a young age but is it possible that they missed it and he does have cerebral palsy?

Sorry, it’s a bit long and I feel a bit mad even writing it down as it seems daft but I thought I would ask the question rather than leaving it roaming around in my head.

Thanks in advance for any replies 🙂

I was wondering if folks with CP have a higher pain tolerance than those without. I ask this because I have spastic hemiplegia on the left side of my body, and I recently injured my left pinky finger. The pain isn’t bad at all, and when it happened people were freaking out and asking if it was broken while I was bending it around like it was nothing and brushing it off. Fast forward to today and I find out that it’s a pretty serious injury that I may need surgery for. If this had happened on my right hand I’d probably be in a lot of pain and known that it was broken immediately. So yeah, do people with CP generally have a high pain tolerance?

Hello, i would like to be informed about stem cell therapies for CP in adults patients. Could you please inform me about the latest news and reasearch results?

Thanks in advance

Hi,
These posts provide me valuable information on health issues. I don’t have any knowledge about this topic. You should contact the expert. I am sorry for that.
……………………………………………….
WATER FILTER REVIEWS AND INFORMATION

My name is Jennifer and I have a 2 and a 1/2 year old son with cerebral palsy. My son was diagnosis when he was 11 months old. We were so overwhelmed with all the possible treatments we could try for our son. Unfortunately, we found that each doctor would suggest a different treatment. We found that through talking with other parents we got the most valuable information. This sparked an interest for my master’s thesis in clinical psychology looking at what treatments parents and caregivers of children with CP find most effective. My study take approximately 15 mins and at the completion of the survey I will mail you a gift card. Any parent with a child diagnosed with CP that is under the age of 6 and is interested in helping me answer this question, please contact me at jmillerf@eagles.nccu.edu. I know as parent of a child with CP life can get busy but if anyone could please spare some time to complete my survey I would greatly appreciate it, as it has be a struggle to contact participants do to HIPPA laws and privacy. Which are good things but have made it very difficult to complete this study. Thank you, Jennifer

Hi All

I wonder if anyone can help, I’m not really sure what my question is…

My brother (in his early 30’s) has cerebral palsy and epilepsy. As I understand it, his condition is relatively severe; he suffers from petit mals, has poor mobility (using a wheelchair outside the house) and has a host of learning difficulties which meant he was educated in special needs schools. He lives with my parents and spends a few hours a week with carers, which he uses to go shopping, to the cinema and generally enjoying life.

My eldest brother and I (in our mid twenties and mid thirties respectively) have always merrily plodded along not paying much attention to our brother’s disability; simply helping him to lead as much of a normal life as possible.

Embarrassingly, it is not until recently that we have taken stock, realised that we do not have any sort of detailed understanding of our brothers condition, needs and how best to help him. We have always relied on our parents for guidance (as you might, growing up in the situation) but it now dawns on us that the guidance they sought when our brother was born (in the early 80’s), might well be out of date. And they, like us, might just be getting on with life and doing what they think is in our brothers’ best interests – without any of us checking that how we behave is actually the best way to help him.

He is now reaching an age where we need to think very seriously about his future and securing the best possible independence for him. He has had a number of life changing events over previous decades, through school, college and the introduction of independence and entertainment activities with carers which have seen him change dramatically. We are now looking to work towards the next step, whatever that may be.

My brother and I are essentially starting with a blank canvas, to try and understanding current medical thinking and how best to look after our brother. Any guidance or shared experience on where to go, what to look for or how to deal with this situation would be greatly appreciated.

Thanks for taking the time to read this.

Tom

Hi, I’m here on behalf of a friend with CP. We’ve discovered this spoon – I wonder if it could help more people who get frustrated when eating?

It’s got a deeper spoon head to hold contents more securely.

Would be really interested to hear if other people’s thoughts on this?

http://kck.st/1qUrMIH

hiya can you please tell me what treatment or support for Adults with Cerebral Palsy, this is all to new to me and to be honest i’m scared.

Hi, about 7 weeks ago now I was told I have Cerebral Palsy (CP) and I’m in my 30’s. I have learning problems, walk on my tip toes, curve in my spine and I also been told my hip and pelvis on the right side is higher than my left, I also suffer with seizures and have done for about 12/13 yrs.

Been there – it’s the best therapy in the world! I can only highly recommend it!

Christy and Hope:

I’m reaching out to you both because my mother is in a very similar situation. She is 61, has spastic displasia, has one child and has worked her whole life and continues to do so. She was even the local poster child in 1959 for the Easter Seals. It has been very hard for me to watch her age. In the last 20 years, I’ve seen her go from free walking to using a cane, a walker (first only outside the house, then to get around inside), to a wheelchair occasionally (outings), and most recently to using a scooter to get around her home. Over the past few years her arthritic knees have greatly deteriorated reducing her mobility even further. She now had a difficult time just getting from the bed to the scooter and back again and unfortunately her reduced mobility has resulted in several falls. She needs at least one knee replacement. She has been to her regular doctor, rheumatologist, and 2 orthopedic surgeons. None of them are willing to help her due to the CP. She has undergone numerous (painful) procedures to reduce the knee pain but nothing is helping her. Like Christy, searching the internet has been frustrating for us because its very difficult to find doctors who are working with adult CP patients. I was wondering if you had your surgeries or were able to find doctors to work with you and if you had a positive (or negative) outcome. I know my mom would greatly appreciate hearing both your stories and possibly befriending a few women in a similar situation to her own. Thanks 🙂

Daughter of a mom with CP and I’m looking help for her.

Dear CPtalk members,

We are Darren and Marta, dedicated professionals working in health and childrens support services in the UK. We are setting up Aceso, a new SDR support project to tackle the difficulties UK families currently face in accessing SDR treatment. Our aim is to provide a matching service, information, travel arrangements and support for families about affordable Selective Dorsal Rhizotomy (SDR) at top specialist hospitals and treatment centres in the EU within easy travelling distance from the UK.

We want to understand the issues you are facing in accessing and funding SDR and aftercare. We would really appreciate you taking the time to complete the survey at the link below to help with this:

https://www.surveymonkey.com/s/TLSGJB7

We ask for your consent as we will need to use any information you provide for the stated purposes and to establish the right kind of service to meet your needs. Please leave your contact email address in the free text field in question 10 if you would like us to get in touch and update you about the project or contact me with any queries by email at roastrev@icloud.com.

Thank you for your time and for any information you have been able to provide to help us to help you in your search for SDR.

Kind regards,

Darren Sutton, Aceso SDR Project Lead, London, United Kingdom

Hi there. My name’s Fiona and I have a 19 month old daughter. She had a pretty uneventful birth but very high bilirubin for a long time. She was just below the threshold for the lamp therapy (literally just) so they didn’t use it, but this did mean she was jaundiced for about 2 months.

She can’t roll over or sit up on her own -she has never pulled herself up. However, she can bum shuffle (at quite a speed) and if she is placed in a sitting position is unlikely to fall over. In addition, she hasn’t started speaking yet really – there have been occasional words but then never really repeated. Her main “go to” noise is “mah”.

I wonder if it’s ataxic CP and am pretty worried. We have physio this Friday and another paediatric appointment later this month. What are the thoughts of the forum? Am I totally over reacting? Is there anything we can ask to make diagnosis either way occur more quickly?

Hello All,

I just saw this story in BBC about Adeli centre somewhere in Slovakia, offering similar therapy in suit, but it seems quite intense:

http://www.bbc.co.uk/news/uk-england-cambridgeshire-24396315

Has anyone been there? I have relatives who have little boy with CP, they say this could help him a lot. Any feedback would be much appreciated!

Hi all, my name is Alex, im new to this forum.

I would like to tell you all about the project Vostlink (http://www.vostlink.com), it offers free software for people with cerebral palsy. I have been working on this project for a few months and would like to hear about your feedback!

I hope you all forum members find the applications useful. Also the project is open to collaboration, if you would like to collaborate to the project it would be very cool.

Thanks a lot!

-Alex

Hi has anyone had experience of the Lycra suit to help with posture control in a child?

Mother off two boys oldest child age 6 has cerebral palsy.

Christy it seems we have a lot in common! I’m a 50 year old woman who also has diplegic cerebral palsy. I also was a poster child when I was two years old. I also have lead a relatively normal life. I also have severely arthritic knees. I got ankle braces within the last few years due to frequent sprained ankles. They were a God send! In recent years my knees have gone from bad to worse. Walking has gone from UN aided to cane to walker to wheelchair. I’m scheduled for a knee replacement right first then asap my left. I too have a lot of worries,about how my co will work out after my surgery. Doctors are hopeful that at least I will have much pain relief. Hopefully I will get back on my feet. I wanted most to tell you about my cerebral palsy doctor. I see Dr Joseph Dutkowski at Bassett healthcare network in upstate N.Y. I don’t know how to get the link here for you but you can search pbs religion and ethics. They have a wonderful interview with him. Also call 1-800-Bassett and reach him . Good luck!

I’m an adult woman with diplegic cerebral palsy. I have lead a relatively normal life. As I have aged I have been having more mobility problems and would like to talk about them.

Stand-up comedian Lee Ridley aka Lost Voice Guy is preparing for his first Edinburgh Fringe show ‘A Voice Of Choice.’

Diagnosed with cerebral palsy aged just six months, Lee from Newcastle, has never been able to talk, and so he communicates through a voice box or iPad.

For gigs Lee connects his iPad to a venue’s PA system so the audience can hear his gags.

Watch Sky Tyne and Wear’s video with Lee here: http://tyneandwear.sky.com/news/article/75506/lost-voice-guy-stand-up-comedian-with-no-voice-lee-ridley-prepares

Dear Christy,
Here is friend #2,
I’m an ed conductor of cp children in Israel.
I think it is worth to seek for help at the Peto Center in Hungary. I think they know almost all doctors around the world who deal with cp. Maybe they will have an answer for you.
Good luck
El- Or

I am an educational conductor. I live in Tel- Aviv, Israel. Just married (last month). I work in a CP day care center. I was in Hungary at the Peto center for a short while. It was a great experience. I love my work and I really think conductive education works.

Dear Zacary,
You sound like a bright young fellow. I’m sure that with your determination you will get whatever you dream.

I am an educational conductor. I live in Tel- Aviv, Israel. Just married (last month). I work in a CP day care center. I was in Hungary at the Peto center for a short while. It was a great experience. I love my work and I really think conductive education works.

Hi fixxer,

We went to Adeli Center in May with our son David (spastic CP) and it was fantastic! The therapy is very intense though, so it’s not for everyone. At the end of the day, he used to cry and complain, but it was so worth it! He is now able to walk 15-20 steps completely unaided, which we never even dreamed of. We hope we can go back in the fall as they are usually fully booked few months in advance.

Hi everyone. I’ve just found this forum and looking forward to getting to know everyone and sharing .

I’ve also started a blog about some of our journey if you are interested.

http://allbornin.blogspot.co.uk/

Sonia

Single mum to daughter age 10 with CP. Work full time and find the juggle a struggle. Writing a blog to share some experiences

Sorry for posting on your message but I’m new
To this site and I cannot see how I write
My own message I’m affected by cp
And have just become a hotel manager
I have always struggled with maths
Like simple adding up and times tables
I look at numbers and go blank I have
To know some numbers due to my
Job I really struggle I can do stuff on a
Calculator. Does my. Cp affect me not
Being able to do this as its so
Frustrating I cannot find any info anywhere
It would be nice to confirm this so I
Can inform my area manager as we
Have to do figures together and I struggle
🙁

Christy,

As ordered:- One Friend.

Not sure if i can give any advice that will be worth anything. I am a mum with an 11 year old boy with CP, so can not even say ‘I know how you feel’.

I know you are having it even rougher than usual at the moment, I will try to find out if there is anyone you can talk to about your situation. I assume you have gone down the route of GP and hospitals, spoken to your family etc. Scope may be able to point you in the right direction? But i will speak to a few people over the weekend to se if I can get anything that may help.

The sun in shining today, so please keep your ‘chin up’ you have, by the sounds of it had a rough but rewarding life so far, please don’t let this current situation get you down too much, and eh you never know you might make another friend today.

Take Care
Anna

Hi everyone. I am a 56 year old female who was born with spastic diplegia cerebral palsy. In fact, I was a local poster child when I was just a young girl. This was me back then.

I have been very successful in life. I’ve given birth to three healthy children who are now ages 21 through 26. My first husband passed away about 12 years ago from cancer, and shortly after I remarried the man of my dreams. I am a semi-retired special education teacher but am currently retraining for an administrative position in the medical field.

Because of my CP and the way I walk I have developed very sever arthritis in both knees. For the past few years I have been treated for the arthritis with cortisone shots and pain medication. Knowing I had developed arthritis I took it upon myself to seek out a doctor specializing in arthritis treatments. However, it has become apparent to me that my doctor is more into treating pain than the actual arthritis.

The cortisone shots and pain medication are no longer effective. I am certain I have pretty much destroyed my knees, especially my right knee. It has gotten to the point where I can barely walk at all because of the excruciating pain. I need to do something, and I need to do something quickly else I am afraid I will end up bound to a mobility scooter the rest of my life.

My biggest problem is that I do not know where to turn. Almost everything I find on the Internet is focus on CP in children, and there is very little information on CP in adults. I don’t even know WHO to talk to about my issues. I have gone to orthopedic doctors, arthritis doctors, and even my primary care doctor and no body seems to know how to treat arthritic knees in an adult CP patient.

Now I am thinking about knee replacement surgery. I am certain that if I am a candidate for knee replacement that after the initial pain from the recovery I will be able to live out the rest of my life virtually pain free. My big question and problem is that I have no clue how my CP will effect my recovery from the surgery, and more importantly if the surgery will make walking more difficult or even worse, keep me from walking at all. I know of a good knee replacement surgeon in my town who I will be calling for a consultation soon, but I am hoping someone here has had some experience with this same type of issue and can help me think things through.

I am feeling so frustrated and depressed. I am so tired of trying knee braces and taking drugs, and seeing a multitude of doctors who have never treated an adult with CP. I feel lost. I wish I could just Google up a phone number I could call and get a live person to tell me exactly which and what type of a doctor can help me out. I’ve tried, and Google is no help at all. Please, I need a friend right about now.

Hi Everyone
I’m attempting to write a sitcom where the main character has Cerebral Palsy.
It’s the story of this chap attempting to make the most of all of life’s opportunities who is quite capable of attaining these things but is constantly frustrated and held back, not by his own disability but by the attitudes and perception of his well-intentioned friends and other characters!
….obviously with hilarious consequences! (hopefully??).
I’m not sure if he’s going to be nice (hero), a complete arse or somewhere in-between.
So why am I here?
Not having the condition myself and with limited experience of it I’m looking for a couple of nice people who might allow me to run some ideas and questions passed them concerning things like coping in certain circumstances, what’s politically correct for my character and what may be close to the bone.
An open mind and a tolerance of my ignorance and some possibly probing personal questions would be an advantage!
Contact should be no more than 1 or 2 emails a month with perhaps 2 or 3 questions on it followed by a bit of discussion when I fail miserably to understand!
Can’t offer any remuneration for this I’m afraid as I’m a lowly independent writer but if anything ever comes of the script (99% unlikely!!) I will be sure to give credit to my “Technical Advisory Team”!
If you think you can help please drop me an email: rimskycorsakov2@yahoo.co.uk
Thanks
Colin

I am 22 with mild cp and don’t be so scared your son sounds like he is doing well at 20 and from my experience certain things take a little extra time to learn so your son should just stick with what ever he wants to do and if people give him a hard time he will prove them wrong in the end. I moved out when I was 17 and have been working a decent job for 5 years and at first I was slow at it and now I am one of the better guys at the company and I have my own place I am completely independent, I am not a parent but I can only imagine that this must be hard on you just because you don’t understand it all completely. As far as the diagnosis is concerned cp is apparently kinda hard to spot at first atleast that’s what I was told ..

Hey there I am a 22 yr old Guy and also have mild cp but I have known my entire life and what I do is I stretch everyday most of the time I never notice my cp .I do have a limp but its not bad and people dont notice unless they are around me for long period’s of time and cp doesn’t get worse with age atleast that what Google has taught me but I am assuming when I am 40 I will probably notice it a little more just because at 40 your not in a young Body anymore. There’s tons of information out there but its mostly useless and is more for parents with kids with cp .

What cp is in a nutshell is damage to the part of the brain that controls motor skills , muscle growth and that happens during the pregnancy or at birth and a mild form I’ll use myself as an example I have a limp in my left leg its not to noticeable and my muscles in my legs get tight or have muscle spasms.

The more serous kinds of cp can very but there’s people who can’t talk they are in wheel chairs can’t control there arms and legs that well are very very shaky .

Idk if this answers any of your questions its almostt 3 am here lol its nice to know there is other people my age with cp I feel like I am the only one in the world with it sometimes ..

Hey I am 22 with mild cp I don’t know to much about your situation and I don’t think you will consider me too much older since we are relatively close in age but nonetheless I will just give you a short version of things I have done and than maybe some advice.

So first off I moved out when I was 17 my parents were moving to a smaller place and said I have to move out and they will buy me a bus ticket anywhere I just finished high-school so that wasn’t an issue but I had zero adult life skills and I found a job 600 miles away that paid relatively good and explained my situation and told them I was down to work and I learn fast and the owners of the company probably felt bad I was so young and no family support they let me stay with there daughter and her husband intell I got on my feet. So after a year I moved out on my own long story short I have been away for a little of five years same job and living a “normal” life and I am a lazy Guy but I am constantly working on that and am getting my work done but if I can do if anyone can.

So I don’t know if that will give you hope my cp might be really different from yours its kind of a weird thing but the best thing to do is work out and stretch maybe even get muscle relaxers or talk to a doctor about adderal from experience adderall reallying helps with shaky hands and tremors but there’s very little research out there I just know it works for a lot of.people with cp.

Hey dude I know sometimes you probably are thinking this sucks why do I have cp I do that too but nobody cares I go out to the bars and can get hot girls And they don’t even ask me questions about my limp or sometimes I am shaky as a matter of fact people don’t ever ask and even if they do just say idk I was born like this or say nothing is wrong with me because nothing is the reason you have cp is because those really popular kids. Could never handle something like it.

My aunt has cp is in a wheel chair and. Can barley talk and she is married and is a millionaire and is a cool
lady . For the glass of water you. Need to keep trying by yourself over and over intell you get it things take time but you will find a way to do something if you want it bad enough maybe use a big water bottle that’s easier to hold

Hey so I dunno if this was what you had in mind so let me know if you have questions and maybe you can explain your situation a little more like if your in a wheel chair, walker, or just two legs (or one)

Hi,

Have you heard about the Adeli/Thera Suit therapy? Some centres in the UK and US offer the Thera Suit therapy, and there are also one or two renowned centres in Central Europe (Poland and Slovakia) using the Adeli suit, and I am sure your brother in Poland knows about these. Apparently, the rehabilitation centre in Slovakia has also complementary hyperbaric oxygen chamber. In some cases, these therapies yield outstanding results, it is definitely worth exploring.

Hey guys, so I am a 19 year old female. Last year (out of nowhere) I started to find that any form of exercise would lead to a few days of limping and quite a lot of pain in my lower legs. Eventually after a lot of tests I have been provisionally (more tests are still being done) diagnosed with to quote the specialist “very very mild CP”.

I was just wondering how CP develops with age? Does it get worse? Did anyone else get such a late diagnosis? Just really interested in peoples experiences as obviously at nearly 20 to be told all of a sudden I have CP has been a bit of a shock & I know very little about it xx

OMG!! Reading your story is my life now!! My eldest son is 10 has mild cp and ep. He was diagnosed when he was a year old and the way the news was given to me was badly handled by the hospital. He has mild cp left sided weakness due to brain haemorrhage when he was 3 days old. Had MRI showing damage/scars on right side. Physio was given to him until he was able to walk then was discharged as they said no more could be done for him as he’s mobile. Had OT therapy again up to a point and again discharged same reason given. I’m so frustrated because I know he still requires help. He cannot do things without me having to tell him every step from telling to get up to going to bed. I’m so exhausted with getting him ready for school or to go out anywhere. I’ve been asking the hospital for help for the last 5 years. I want to help him but don’t know what more I can do. No one seems to want to help me in the professional areas. He has mental problems more so than the physical and we’ve only just been able to transfer him to a special school. I knew when he was in nursery that mainstream school would be difficult for him but was told he was fine and didn’t need support!! Well within a week of starting school it was very apparent they had been wrong. Amazingly he was given a statement on the schools and my recommendation. He got a full time TA one to one and speech therapy. I feel that I am always fighting/nagging just to try to get him the slightest bit of help/support. I’ve only been doing it for 10 years so I can’t imagine how it’s been for you. I’m so pleased you have shared your story as I’ve been feeling so isolated, thank you.

My godson is 17 months old and I am looking for help in Uk, I know that each child is different however I would like to know what is the most popular treatment for children with Cerebral palsy (CP), I have seen on http://www.scope.org.uk/help-and-information/therapies and the list is endless, My brother is mostly using Bobath and vojta method as he is based in poland. But I would like to find out which one is most effective and most popular method. Michal (my godson) is still not sitting…..Intellectually there’s everything fine- he is sweet & optimistic kid ( although his problems). Please let me know if You can recommend/suggest or advice of anything else that we can do….. which methods have you tried? Thank you for help in advance

Izzy-twinkle Toes-charity this is a charity on facebook why not look it up and we are also on twitter @izzytwinkletoe give us a follow and spread the word about this wounderful charity for Children/Adults with Cerebral Palsy

Can I just remind everyone that Scope offers a huge amount of information and support. Their Face 2 Face project is well worth taking a look at.

You can find out more information at http://www.scope.org.uk

Just a quick note to anyone in Middlesbrough and surrounding areas. Soccability football is a club where young disabled children (upto 16) can participate in Indoor Football Training Sessions No Matter What Their Ability. The group meets Saturday mornings 10-11am at the Southlands Centre, Ormesby Road, Middlesbrough.

Anyone interested let me know and I will send you more details.

Regards
Anna

Hi Gillian,

I understand, as a parent you will try almost anything if you think it will help. I remember taking our little lad when he was only a few months old to a lady we had heard of, an expensive treatment which had her hovering her hands over him for 20 minutes or so!

The group you have set up sounds really good, where are you based? Do you get many children/parents contacting you? I would be very interested to hear a little more about it. If you don’t want to post too much info here you could send me an email via this site.

regards
Anna

My daughter is 35 years old and has cerebral palsy I like most mums looked for a cure looking at different types of therapy I first took her to Budapest which turned out not very helpfull for her , then I took her to the Agnes Hunt orphopedic hospital in Wales where wonderfull things were being doen , hoever after fourteen weeks of beimng in the hospital and all surgeries being doen to help her , it became claear that Sabrina was not menat to walk, to a mother you never wnat to hear this, but now I can say that my daughter as inspired so many young people with CP that it does not matetr if you are not meant to walk its about your quality of life and what you dpo with it, my daughetr now porvides advice and support to hundreds of families of disbaled children she also takes educational awaerness puppet porgramems into schools teaching children about disbailities and usess life size puppets that represnt real children , Sally her puppet who has cp is asked the most questions as most children see disbailities as only physical , but through these puppets she is creating a count me in society .

Today ther is several treatemnets for children with CP my suggestion is ot speak ot other parents of children with CP who may have tried these therapies or different treatmenets and make sue its the right one for your child , what I say to all the families that acecss our help is to always remember every child is different

I am the mother of Sabrina who is 35 years old and has Cerebral palsy my daughter is my inspiration for setting up Kidz Aware , I am the founder of kidz aware we provide free services to disabled children parents/carers and adults with disabilities our mission is to ensure that all childrenand adults with disabilities have the opportunities to achieve their aspirations in life.
In pursuit of our social mission, we have developed the following key aims
• Improving the lives of families with disabled children
and adults
• Developing a ‘count me in’ society

What I love about the work I do is I also get the opportunity to meet thousands of young people whilst educating them around disabilities racsim and bullying our organisation provides educational programems to schools and we use life size puppets to represent different disabilities what is great is it is really making positive changes

Cerebral Palsy patients can be assisted by Physical therapy, Behavioral therapy, Drug Therapy and Surgical Therapy.

There is no cure for cerebral palsy. Adult stem cells derived from the bone marrow have shown effectiveness in treating the symptoms of cerebral palsy. This can be done in conjunction with rehabilitation.

__________________
Treatments for Cerebral Palsy

Simple girl with a big dream. At the young age I can say that I am independent that I can stand by my own. I became nurse with myself, my parents are separated and I am the only child that’s why i became independent, I live in my own. Being nurse is not an easy job, but it’s my fashion, Im happy when I save people’s life’s. Oh by the way I’m working in one of the top hospital in the world, I can’t say the name but all staff are very kind.

I’m Zachary Smouse, I’m 19 years old living with Cerebral Palsy. I feel like I’m stuck in a body limiting my abilities to succeed with my dreams. I want to get out on my own, but some things I can’t do. The simplest things that normal people do in everyday life, I can’t do by myself; like I can’t cook, wash clothes, and fill my cup up with drinks. I need older people that have Cerebral Palsy to talk to that have succeeded in life; I want to succeed my dreams.

I’m Zachary Smouse, I’m 19 years old living with Cerebral Palsy. I feel like I’m stuck in a body limiting my abilities to succeed with my dreams. I want to get out on my own, but some things I can’t do. The simplest things that normal people do in everyday life, I can’t do by myself; like I can’t cook, wash clothes, and fill my cup up with drinks. I need older people that have Cerebral Palsy to talk to that have succeeded in life; I want to succeed my dreams.

I have the exact same problem as you with the cold weather. I also have mild cerebral Palsy that affects my legs. I walk with a limp and when the weather gets cold I find that my leg muscles will become so tight it is hard to move. I find also that my feet and calves are constantly cold when I am not moving around or in 90 degree heat. I don’t know if these two issues are related or if the cold feet/legs is just a separate circulation problem. I guess I just find it odd that areas of my body most affected by the CP always feel ice cold. I have asked a few doctors about this and they all just kind of shrugged.

-Nicole-

Forum, Meeting Point, duration of the project Trendsetters young people, and young people with support and information resources that are available to other young people will produce new challenges such as to enable us to work with you to highlight the priority has been set up as part of their day in the life .

Jared

Check out the Scope site at http://www.scope.org.uk they have a bog for young people called Trendsetters, my son is a member. It is only fairly new but the more people we can get to use it the better it will be for everyone. You could get your parents/carers to get in touch with Contact a Family they send out newsletters for disabled people and give information on local things happening.

I know from Harry (my son) it is difficult to find and chat to young people, he has made some good friends through a Soccability football group which offers football for disabled people, not sure how your CP affects you, could this be a possible option for you? or the Riding for Disabled Association have groups all over the country. I also know of a Wheelchair football group in the North East of England, and I am sure there must be others out there. I will try to find website addresses and post here, but if you have any luck let us know.

Hope you get sorted soon.

Take care

Anna

Hi,

I was wondering if anyone knows of any groups or other websites or something for people with CP? I’m 16 and kinda want to meet some other people who have it. If you know of anything of the sort please post it here.

Thank you 🙂

I’m Jared, I’m 16 and I live in Warwickshire. Currently training to row with Paralympics GB in Rio 🙂 Joined this forum in the bleak hope of meeting some others with CP…

Hi,

Does anyone has experience with the so-called Adeli/Thera Suit therapy? I know some centres in the UK do have the Thera Suit, and there are also one or two renowned centres in Central Europe (Poland and Slovakia) using the Adeli suit, but I am looking for some first-hand experience.

Thanks in advance!

Hi Eve

I hope you are holding up well and that little Samuel is improving and getting better.

My daughter is CP and she was very severe
I did an adaptation of the Glenn Doman therapy at home as we lived in Africa then.

The last reply was correct you need to stimulate that arm / hand with a nice firm massage, Running perhaps a slightly rough texture face cloth up an down the arm front and back. Then play with that hand stretch it out help it to touch different types of surfaces smooth, rough, cold hot etc. It can be fun and can be done in play

Put Samuel on a clean floor any time you can ON HIS TUMMY. Tummy time is everything for brain development.

Read Glenn Doman’s book if you can (What to do about your brain injured child)

My daughter lives in her own flat now and has a diploma in integrated dance leadership. Doing the therapy is hard work sometimes but becomes a lifestyle and the repetition of normal movement re trains the brain when it can.

Another great site http://www.special-needs-hope.com

With much love
Cathy

A mum of a 26yr old daughter Laura who became CP after and accident on Christmas Day when she had just turned one. Did all Laura’s therapy myself at home. – she went from brain blind, unable to suck or swallow and able to do little else – to today, living in her own flat with a diploma in integrated dance leadership and performing arts. I have many lifestyle tips I would love to share with parents of CP children that can make a difference, they are so easy and become part of everyday life.

My name is Kim Hubbard and I have CP and so does my husband. I know that even prior to the down turn in the economy, it was hard to get our needs met without major income. I did find a site that will allow individuals to tell their story and ask for help with unmet needs. It is a fantastic way to get the word out to those who know about financial resources that are not advertised and might be available to assist those with disabilities. There is absolutely no charge for it. The link is http://www.accessible.org and I encourage you to check it out. I have submitted my story, (just yesterday) and am anxious to see what happens. It is not all about money either because there are health related articles on nutrition and etc. I hope this helps. God bless!

I have mild spastic cerebral palsy in my legs. It causes me to walk with a limp and also causes my muscles to be tight. I walk with a limp because of it. I have noticed that when I am in really cold weather, it seems to aggravate my cerebral palsy symptoms. My muscles would get so right that I would find it difficult to move. I was wondering if anyone had any suggestions about any medication to alleviate the problem.

Hi,

I have a 12 year old with CP. We did not have any questions about the diagnosis because during delivery the baby was with-out O2 for about 15-30 min and was born not breathing etc.

It is possible that during the placenta abruption your sons might also have been oxygen deprived. There is really no way to tell other then to look at development first. However a high quality MRI should also show if there is any damaged area to the brain.

At that gestation age, you would expect to see abnormality in the basil ganglia region of the brain if there was prolonged O2 deprivation.

If developmental issues are arising, and the MRI shows abnormality consistent with an HIE injury then its pretty likely it is an HIE injury which could lead to Cerebral Palsy.

There is no effective treatment that we are aware of. However, movement therapy with the goal of re-wiring the brain is the current and best approach. You can do this at home yourself, but a good Neruo-developmental Therapist (Bobath style if you are in the UK), can help.

Basically you want your child to experience all the normal movement and sensory patterns of a normal child. The basil ganglia injury hampers movement and thus all the things that are need movement. For example, if the hand is not working then it is less likely the baby will be exploring the environment by putting things in their mouth as normal babies do. This could lead to sensory issues, eating issues, and overall weakened muscles. The key for improvement in HIE children is to reproduce the normal stimulation patterns as closely as possible. This means lots and lots of hands on assistance (think many hours per day), becuase your baby will not be moving that arm like a normal child through the day. So you need to assist him. Ideally, you will educate everyone in the family and everyone can assist through the day while playing with the child, bathing the child, feeding the child, etc. So, just adapt the thearpy into your daily routine.

We have a foundation with the goal finding even more effective treatments. Perhaps even a treatment that is so good that it can be called a cure. Find out more at http://www.brightfoundation.org.

Founder of BRIGHT and father to 12 year old girl with CP.

Hello,
My goodness I can not believe 20 years! I have heard of many parents struggling to get a diagnosis, but they have young children. It must have been so difficult for all of you, but to look on a positive side, you now have a diagnosis and can move forward with that. It must answer so many questions both you and your son have had. This is not the end, but a beginning of life with CP, which as I have seen so many times does not have to be as bad as you are probably thinking. Your son has grown up with, as you say, a mild form of CP, whilst the diagnosis does not really change anything, it may help you in the future, he can now say I have Cerebral Palsy not I was born wrong. You can find out a lot of information from Scope, their website is http://www.scope.org.uk and they can send you a lot of information as well.

Is he still receiving physio and speech therapy? or receiving any form of support?

Since my eldest was born he has struggled with various issues at just a couple of weeks old he suffered his first fit, I had never seen one before so didn’t quite know what happened however I spoke to my health visitor and never felt I was taken seriously, at the age of 2 he had an awful fit which resulted in him being hospitalised, the fits occurred every 6 weeks after that, he had a brain scan (CAT??) and MRI scan to determine the cause of the fits, the MRI came back saying he had scars on his brain and was put on Epilim, this didnt have any effect on the fits and he continued to have fits til the age of 7.
However he also had other issues, behavioural, late development of key milestones, difficulty feeding, weak left side, he had got a bad reputation at nursery for being out of control which followed him throughout his first years school life until finally someone took me seriously and he was given speech therapy, physio, OT and support in school.
He regularly visited the school doctor, consultant paediatrician, speech therapist and various other professionals in and out of school, a programme was set up for him by physio & OT and his weakness, co-ordination did improve to the point they felt ‘they’ had succeeded, however he still had other issues, time after time I tried to get to the bottom of it, putting forward various ideas, i.e autism, ADHD etc etc, he was never diagnosed with anything. My final appointment was with the consultant paediatrician who said as nice as he could “You are just going to have to accept he will only ever be a shelf stacker”he was 12 at this point and I cut of contact (rightly or wrongly) as I was so angry that at that age they had written him off
So fast forward to today, he is now 20 and has been to college and achieved a level 2 in professional cookery and really enjoys the work, but his confidence has hit rock bottom after colleagues/bosses have given him grief for being slow/not understanding complicated instructions, one chef took him aside and said “I am not being cruel but is there something wrong with you” to which he replied “I was born wrong” (heartbreaking)
So we went back to the doctors and asked for a referral to a neurologist and for an MRI scan, he had the scan which came back clear apparently it wasnt scars but could have been a leak according to the doctor BUT during this conversation he said “people with mild cerebral palsy can benefit from intense physio” I almost fainted as we had never been told this was even a possibility he had this condition, so here I am still very much in shock but so angry at never having been informed of this before. Thankfully t went over my sons head, he didnt know what it was so chose to bot listen, I will obviously sit him down and talk to him once we have spoke to the neurologist.
I came home and researched CP well he has almost all the symptoms(?) listed although obviously as it’s mild he has been very lucky, I have so many questions but we dont see the neurologist for another 8 weeks and I think I will go crazy waiting, how can they not have ever mentioned this to me before it’s not like I havent tried to get to the bottom of this, so many things make sense now, he gets an invitation for the flu jab every year and we never knew why and just ignored it thinking it was a glitch in the system, has anyone ever been through this I need advice please.
Is it negligence/ignorance/incompetence on their side, I am sorry for rambling but I am shellshocked still, 20 years worth of frustration has all come out at once and I can’t bring myself to actually say out loud to anyone the diagnosis with bursting into tears.
Thank you for taking the time to read this xx

Hi everyone…
thanks for update me i want also share my views related this topic
Are you Going through communication problems? If yes, then you are not alone as we are here to help you in finding a proficient physician in the area near you live.

Find a speech pathologist, Speech therapist

Hi everyone.

I have just come across this site whilst looking for help for my 7 1/2 month who doesn’t seem to be moving correctly.

My little boy keeps his right hand in a fist and will not use it unless he absolutly has to (not often). He either keeps his arm slumped down next to him or up in a hi five position but behind his body (if that makes sense).

He has lots of other medical issues (allergic reactions, heart murmur, squint, GERD) and his consultant just fobs me off – he said he is just left handed like his mum. But I have a degree and lots of years experience in child development and education and i know something isnt right and children arent meant to have a hand preference by now – started at 5.5 months!

I had a fall causing a placenta abruption at 35 weeks and was bleeding and went into premature labour – the managed to stop it, gave baby steroids and kept me in hospital on bedrest. At 36 weeks they were worried about the babys health and so induced me. His labour was fine. He didnt need nicu but had to stay in because he had low blood sugars and jaundice. I believe that the complications at the end of the pregnancy have led to this.

Sam is a happy smiley baby but has been late to reach milestones although he does get there eventually.

Any thoughts would be so much greatly appriciated!!!!!

Doctor referred me but my allergy consultant cancelled it and said everything should be done through one consultant (nhs savings I presume!)

HV has said to keep an eye and they will look at it when he goes for his 8-12 month check but she doesnt know when that will be.

Should I go to my GP who is lovely, see if she will help?

Eve

Hi Im Eve,

Married to Chris, Mummy to 3 beautiful darlings. Molly (5), Charlotte (3) and baby Samuel (7months)

Molly has hearing and sight issues
Charlotte has sight issues
Samuel has multiple anaphalatic allergies, GERD, heart murmur and a squint

Wouldnt change my babies for the world 🙂

Hi mum of 4

I have just come across this site whilst looking for help for my 7 1/2 month old who is exactly the same!!

How is your little one now? Did you get a diagnosis?

My little boy keeps his right hand in a fist and will not use it unless he absolutly has to (not often). He either keeps his arm slumped down next to him or up in a hi five position but behind his body (if that makes sense).

He has lots of other medical issues (allergic reactions, heart murmur, squint, GERD) and his consultant just fobs me off – he said he is just left handed like his mum. But I have a degree and lots of years experience in child development and education and i know something isnt right and children arent meant to have a hand preference by now – started at 5.5 months!

I had a fall causing a placenta abruption at 35 weeks and was bleeding and went into premature labour – the managed to stop it, gave baby steroids and kept me in hospital on bedrest. At 36 weeks they were worried about the babys health and so induced me. His labour was fine. He didnt need nicu but had to stay in because he had low blood sugars and jaundice. I believe that the complications at the end of the pregnancy have led to this.

Sam is a happy smiley baby but has been late to reach milestones although he does get there eventually.

Any thoughts would be so much greatly appreciated!!!!!

Hi Im Eve,

Married to Chris, Mummy to 3 beautiful darlings. Molly (5), Charlotte (3) and baby Samuel (7months)

Molly has hearing and sight issues
Charlotte has sight issues
Samuel has multiple anaphalatic allergies, GERD, heart murmur and a squint

Wouldnt change my babies for the world 🙂

Hi Kerry,
Welcome to CP Talk. How are things going today? you can use this site to chat about anything, moan about everything and ask anything. If people have an advise they will let you know, or we can be the shoulder to cry on, the person to shout at and to share all good times s well. Hope you find it useful in some way.

Speak again soon.
Anna

Any contribution would help in helping to make CP and Me documentary come together. Please take 5 minutes out of your day to watch the campaign geared to spreading awareness on Cerebral Palsy.

http://www.indiegogo.com/CPandMe

I’d like to share a campaign for Cerebral Palsy. CP&Me will convey a special, yet powerful message about those affected by Cerebral Palsy and how each of us can become part of making a difference. Visit the website and see how baseball player Casey McGehee, Jacob, Founder of One Step Closer Foundation and others on how they live with Cerebral Palsy.

http://www.indiegogo.com/CPandMe

Hello im new to this site. My name is Kerry and I am a mum to a beautiful little girl Ceyda who is 6 years old with dystonic cerebral palsy. I have never joined any forums before so be gentle with me lol

Hi my name is Kerry and i am a mum to a gorgeous little girl called Ceyda. She is six years old with dystonic cerebral palsy in all four limbs. Life with Ceyda is not easy but it is also very worthwhile and rewarding. We live in Brighton with my husband and cat

So sorry it has been a long time since I posted here, busy busy. Hope we find you all well. H is now 10 attends a mainstream school, with care and teaching assistants, has a good group of friends and is part of Soccability a football team for disabled children, he loves football. He is also horse riding, which he hates with a passion, but its great for his core stability. He accepts his physio and speech therapy with varying degrees of enthusiasm, depending on his mood.

Hope for an update from you.

Take care
Anna

We are a film and TV casting company based in Scotland and we are working with a French production company who are making a film (fictional) about a family that has a son who lives with cerebral palsy. JULIEN has quite a complex form of CP, and the film centres around his and his father’s decision to compete in an Iron Man contest together. The director, Nils Tavernier, is a French documentary film maker who has worked a lot with families who care for a child with a disability, so the inspiration for the story came through that.

As I mentioned, we are looking to cast a boy of around 18 years old who has cerebal palsy to play the part of JULIEN. The film is being shot this summer in France. There will be no need for the boy to be able to speak French as JULIEN will use a communication device. Nils is incredibly keen to cast someone who genuinely lives with cerebral palsy, and not an actor ‘acting’ it, so they have expanded the search to the UK. Please find some more notes on the character JULIEN at the bottom of this email.

We would like to reach out to as many boys who live with cerebal palsy in the UK as possible, and if they are interested in being part of this project, we would ask them to put themselves on tape. Please find information on how to self-tape, what we are looking for on the tapes, and where to email them to, at the bottom of this email. Please note that we do not require the boys to have had any experience in acting or performance before.

There is quite a tight time line to get all this done, we would ideally need to receiving self-tapes by mid-May.

Please feel free to go to the Kahleen Crawford Casting web site (http://www.kahleencrawford.com ) to see who we are.

Notes on the character JULIEN
Julien has quite a complex form of Cerebral Palsy, he uses an electric wheelchair and because he has limited speech, also uses a communication device. Julien is 18 years old, so we are looking for a boy who could pass for that age. Julien’s intelligence is unaffected by his cerebral palsy.

Guidelines on Self Taping
1. We do not need the self tapes to be of a professional quality – any reasonable quality video camera, laptop with a webcam/isight, or even camera on an iPhone etc will do (lower specification mobile phone videos are not ideal, but get in touch on the email below if it’s all you have). We do need good light so that the images are clear, though. If indoors, please face the window and have the camera with it’s ‘back’ to the window, don’t shoot into the window or it’ll come out dark. With phone videos, and stills cameras shooting video, please be careful which way (landscape or portrait) you’re holding the recording device – the video can end up being sideways in playback! Best to do a little test first, and watch it back yourself.
2.We just require you to give us a little info on yourself, e.g name and age, where you live, a little about your family and friends, what interests and hobbies you might have, tell us about what you’re studying etc. If they think it might be useful, the person recording can feel free to repeat this info back while they are filming. A few parents/friends did that on the French casting tapes and it worked well. If you use a communication device, but also want to speak, it’s worth doing a bit of both to show us.
3.The tapes don’t have to be any more than a couple of minutes long max.
4. It would be good to try and get the person doing the camera work for you to do some close-ups of your face, as well as some long shots of you full body/in your wheelchair. If you walk comfortably, you might want to show us that in the video as well as you being in your wheelchair.
5. Please email all self-tapes and/or any questions to: proofoflife@kahleencrawford.com . You may find that they are not able to email the file if it’s quite a big file size. If so, we recommend looking into sites like wetransfer.com , and yousendit.com . It’s also possible to upload the video to

We don’t have a lot of time, so please get the video to us ASAP, and certainly by Monday 14th May latest. You can still check after that deadline if we’re taking more tapes, but it’s possible we won’t be, so do get it to us as soon as you can!
7. Before your self tape has been sent in, you can always send an email with a coupe of pictures attached (one full length, one close up face shot) just to let us know that you are interested and will be sending a tape in.

The Next Stage
We will forward all the casting tapes to the French production company. Their plan would be to do some ‘recalls’, probably by coming over here to meet people who might fit the role of JULIEN, but possibly by more self-tapes after having some conversations with us/our French colleagues. That would be happening as early as late May. They will then try out some scenes with the people they are recalling. The French company are happy to help with an acting coach, and will make full provisions for accommodation etc for the person they cast, the role itself is also paid work. Please remember the film is due to be be shot sometime within the period August through to October (with costume fitting, rehearsals etc before that), so remember to flag up with your application if you have any non-moveable commitments within that period.

I’d like to thank you again for all your help with this exciting project, and I really hope we can find an amazing boy in the UK who can play JULIEN!

Best wishes,

Danny

We are a film & TV casting company currently looking to cast a boy of around 18 years old who lives with CP to star in a new feature film being shot later this summer in France.

Stephanie,
Where are you studying? I would be more than happy to answer a few questions for you, do you have a questionnaire?

regards
Anna

Hello everyone,

My name is Stephanie, and I’m in my first year of a masters program for speech-language pathology. I am currently taking a course on motor speech disorders, which focuses on diseases such as Parkinson’s, Amyotrophic Lateral Sclerosis, and Cerebral Palsy. Since I have little experience with Cerebral Palsy, I would love to interview one (or more) of you about the day to day experience of caring for a child with CP, speech problems related to CP, or anything else you’d like to talk about. I am absolutely not trying to invade your personal forum, but I will be doing therapy with these precious children in the future, and I’m trying to learn as much about CP as possible in the meantime. If you are willing to fill out an interview, please reply to this post. I am willing and happy to give you my email address if you’d rather that. Thank you so much for reading, and I’m very sorry if I posted this in the wrong area.

Stephanie

Human error can certainly cause cerebral palsy

During delivery, a doctor must make sure that the baby gets enough oxygen. Barriers to this include being stuck in the birth canal or being caught by the umbilical cord. As well, when a baby mores itself into an improper position during childbirth, a doctor must act immediately and sometimes order a C-section.

If anybody has any spare charity collecting tins can you please drop me a reply to this post as we have a few events coming up and need some tins urgently.

Many thanks

Tom Evans

Hello everyone,

Here is our latest blog on “The first steps to improving a child’s drooling”. Read about the importance of trunk support, and how with such support, there will be increased support of the neck which will lead to improvements in their facial expression and facial control. To read more about the steps to improve a child’s drooling, click the link below.
http://enabledkids.ca/?p=2057

Thanks,
Natan

Natan Gendelman is licensed as a physical therapist in Russia and Israel, and is certified as a kinesiologist and osteopathy manual practitioner in Canada. Natan has more than 20 years of experience providing treatment for neurological conditions. He is the director of Health in Motion Rehabilitation located in North York, ON. For more information, visit: http://www.healthinmotionrehab.com/life-program.php

Join us on Feb 25th, 2012 at the North Thornhill Community Centre in Vaughan, Ontario for a free interactive workshop for parents of children with cerebral palsy, developmental delay, stroke and acquired brain injury, where you can learn how to develop your child into independency following the LIFE approach. For more information about this workshop, follow the link below! To RSVP, call (416) 250-1904!
http://www.healthinmotionrehab.com/press-health-in-motion-rehab.php

Thanks,
Natan Gendelman

Natan Gendelman is licensed as a physical therapist in Russia and Israel, and is certified as a kinesiologist and osteopathy manual practitioner in Canada. Natan has more than 20 years of experience providing treatment for neurological conditions. He is the director of Health in Motion Rehabilitation located in North York, ON. For more information, visit: http://www.healthinmotionrehab.com/life-program.php

If you have cerebral palsy and love to play football, come and join CP Sport at one of our free football events. All you need is a pair of shin pads, plenty to eat and drink and astro turf trainers, suitable trainers, or round rubber/plastic moulded studs.

*Open to all ambulant footballers with cerebral palsy aged 5-16 – and it’s free!
*All standards welcome
*Family friendly environment with coaches who understand your disability
*Meet other families and make new friends

Development sessions for 5-11 year olds (walking sticks, canes, crutches and open-fronted walking frames welcome).

Football league for 12-16-year olds (must be able to play unaided).

To register for any of these events please call Dermot on 07974 154 329 or email: dermot.dolan@cpsport.org

FULL FIXTURES SHOWN BELOW:

Sheffield Utd
Sheffield United Academy Indoor Training Facility
Firshill Crescent
Sheffield
S4 7DJ
Date: Sunday 26th Feb 2012
Time: 12-4pm

Manchester Utd
The Cliff Training Ground,
Broughton Road,
Salford,
Manchester
M7 2HU
Date: Sunday 18th March 2012
Time: 1-5pm

Nottingham
Bingham Town Youth Football Club
Butt Field Club House
Bridleway (off Moorbridge Road East)
Bingham
Nottingham
NG13 8GG
Date: Sunday 22nd April
Time: 1-5pm

Leicester City Football Club Training Dome
Training Ground,
Belvoir Drive,
Aylestone,
Le2 8PB
Date: Sunday 6th May 2012
Time: 2-6pm

Yorkshire
Featherstone Technical College,
Pontefract Road,
Featherstone
LF7 5AJ
Date: Sunday 10th June 2012
Time: 12-4pm

My name is Dermot Dolan and I have been working for Cerebral Palsy Sport (CP Sport) since October 2010. I am very proud to be working for this charity and feel honoured to be given the opportunity to help the charity get even more people involved in sport.

Do you have cerebral palsy? Are you interested in getting more involved in Sport?

Nottingham based charity CP Sport is dedicated to providing sporting opportunities for those with cerebral palsy. CP Sport introduces those with cerebral palsy to grass roots sport and works with them to develop their talent. CP Sport is very clear about the role they play and for those who simply want to be involved and enjoy sport, without any ambitions to chase medals, there’s a place for them within this organisation for as long as they want it.

If you’re a parent, teacher, health care professional, youth worker, sports coach or individual interested in getting more involved in athletics, swimming, football, bowls, table cricket or multi sports days, this could be just the start you need.

I want to hear from you! Sport is for everyone!

Hi Anna,

I live in South Lanarkshire in Scotland. No app in yet form the hosi but I took my little one back to the doctor yesterday to see my own gp. He said that it is likely that it is cp, hemiplegia. He mentioned a couple of other things it could be but that he didn’t come in to any of the risk factors for those. His “risks” matched with hemiplegia and he seen for himself what his hand and arm are like. He is going to chase up teh hospital today to try and get an app asap. He said that they may or may not look to diagnose him at his age depending on whetehr they want to do an mri which he said is normal in diagnosing cp. He is only almost 8mths so he said he would have to be sedated for an mri and it’s down to each paed whether they would want to sedate a little baby or not to reach a diagnosis, he said alot of the time they will say treat him as though he has cp and they look to diagnose at a later stage when he should be reaching more milestones. Atm though everything is pointing to cp. Mu gp said that the hosi should arrange physical therapy for him either way asap though to help.

Sorry for not getting back to you sooner, Christmas prep and moving house next week! Just a little crazy I know.

A lot of what you are saying sounds familiar. Keep pushing to get a sensible diagnosis, have you got your hospital appointment yet? Which part of the country do you live in?

Take care
Anna

Thanks you Anna. He doesn’t sit up yet, he needs alot of support to sit. He doesn’t roll but he tries to go on to his side but can’t. He eats completely fine and his legs seem to also be fine, it just appears to be this one arm and hand. I have a 5yr old, 3yr old and his twin so I do notice that the use of that arm and hand is really not “right”. His arm is mostly kind of in all the time and you have to retract it to get him to straighten it out if that makes sense? His hand is cenched tight almost 24hrs a day and will very occasionally stretch his fingers out or slightly wave his arm if he gets excited but he will use his other arm and hand for everything normally. He seems to have a very strong grip in that hand i.e. if you manage to push your finger in to his hand he is very strong so it’s not like he doesn’t have any muscle tone. When you do manage to prize his fingers away form his hand then he has indents where he has pushed his fingers in so hard to his palm. Im just not sure at all what could be causing this but there is def something not “right”. x

Why not sit down and talk to her about how you are feeling. She can then let you know her feelings, this might help you both to wotk through this. Talk to a friend and ask them for help and support. There is also Scope website which might offer you some more advice.

Take care.

Hello mumof 4

A very difficult one.

Does he sit up yet? are his movements different from his twin? how is his feeding? what is he doing with his legs?

There is no way anyone can say yes or no to CP without a proper diagnosis. I think i would be back onto the GP asking who she had referred me to and then contacting them to see howw long their waiting list is.

Our GP uses a self booking system where he gives you a letter with a code to get onto the NHS website and book your own appointment from a selection of hospitals in the area, the hospitals give estimated waiting times, so you can either go for the closest or the quickest, you could ask if they have this facility.

The thing with CP is that all children present with different things, and it is only when they do not reach or are delayed in reaching their development milestones that parents/carers start to question things. Of course it could be be CP, but i dont think anyone on ths site would say yes. Our little boys used to clench his fist and had seizures when he was a baby, they settled down, but rose up again a few years ago.

You might want to, if not already done so, take a look at Scopes website, they have lots of info either on site or that they can send out to you.

Take care and let us know how you get on. Keep checking back here in case anyone else posts a reply to you.

Anna

Hi everyone, I am looking for some advice please. My 7mth old is a twin and he had a chest infection at birth which he was in icu for 3 days he then came back to me but was rushed in to icu again after having some kind of strange fit. He was born at 37wks and weighed 5lb 5oz. He had some funny turns when he got home but was diagnosed as having reflux and has been taking antacids for that ever since. He has one hand tightly clenched and doesnt use that arm very often either. You have to prize his fingers away from his clenched fist but he will still not use it i.e. if I hold a toy out to him on this hand he will use his other hand to try and get it, he uses his “good” hand do do everything and will flap that arm and play but the other arm and hand he wont use. I took him to the doc but she was very young and just said she had’t seen it before and referred him to the paeds but that was 6/8wks ago and he still hasn’t seen anyone since. His arm and hand are also very cold in the morning when he first wakes. It was only today when trying to find out more info I stumbled across monoplegia and cp and thoguht this sounds like my baby. He cant roll over yet but tries to go on to his side. What do you think?

hi.
i feel so alone at the moment.
ok i have been with my girlfriend for a while now and 2months age we found out that she was pregnant. i can be abit clingy at times. everything was fine untli one day the other week were she said to me that she wanted space. i then found and email that was ment for her friend but she sent it to me by mistake. the email said that she had signed back up to a dating website and looking for sex and she cant deal with having a boyfriend with cp. we dont live together but was due to and now i feel so lost and miss and love her so much. she wont pick up the phone email nothing and now she is never at home.

i have mild cp
i am a fulltime carer

Sam,

I think it would be best if you let us know when you have a firm idea as to what the toy will be, and what you hope it will achieve. You could then ask for advice on the practicality of the toy and its workings

Good luck
Anna

Hi all.

My name is Sam I’m an engineering student at a university in Glasgow scotland. I and my class have recently been asked to look at developing a toy which provides physical and cognitive development for children aged between 10 to 14 with cerebral palsy. The idea would be to develop a electro mechanical game that would allow a more normal interaction with other children and adults. I have only just begun to look into and research the potential of such a device to help children but obviously any help, advice or thoughts that any one has would be greatly appreciated. I will also post any progress I make as I develop the idea so feel free to criticize and add any thoughts you may have.

thanks

Hello everyone,

I recently met with a lovely lady named Penny from Scope, she was able to provide me with a lot of new information about what Scope has to offer especially to those of you looking for support when you have been given the news about your child having CP. As we all know this can be a very sad, stressfull and upsetting time. A time full of lots questions and few answers.

Take a look at their web site too it can be found at;

http://www.scope.org.uk

Hope all is well with everyone.

Take care
Anna

Competent use the real yoga therapy is a path of a victory a children’s cerebral palsy!

1.I use my yoga individual therapy against CP children/teenagers at the age approximately from 7 till 15 years.
It is defined by my personal several causes:
– It is very important for me to have a direct contact with the small patient and it is mutually good to perceive each other without any other person.
– It is necessary for every my patient to have the patience and desire to make many different physical exercises
– the most later period – the teenagers age. It is important for locomotor system.
2. Besides, I work with those children and teenagers who did not have surgical operations on muscles and tendons.
3. My patient should have a good development of cerebral activity.

At observance of these minimum conditions I am ready to start to be engaged in his or her rehabilitation.
My work is based on complex influence without medicines. Basically I use the integrated yoga therapy and massage.
As additional influence I make and I apply special overlays and other constructions to bracing final for some time during a rest and special training time.
My procedures provide the complex influence on the all organism. We train:
– Breathing
– Relaxation
– Stretching
– Coordination hands, trunks, a head and feet movements
– Special yoga exercises
– Physical strength, persistence and endurance
Rehabilitation time depends on many factors: the type of CP, age and specific/individual capacity of the real patient. But with diligent and persevering employment the first notable results can be received after some months. The real end results can be reached during from one to (maximum) 2 – 3 years.
There was a teenager in my practice at the age of 15 with which I have started my rehabilitation. His diagnosis was a double diplegia. It means problem with all four limbs and throat: speech, swallowing, moving with a head. Before my first visit to him he was able to grabble only, never stood on his feet and could not move adequately hands. He had defects with his speech also.
In one year of special yoga training with me he has learnt to go, use public transport independently. In one and a half year he was able to run! We have eliminated muscle contractures, activated his power, improved his relaxation possibility and his speech. He learned to serve himself in everyday life. It is the real wonder!
I am a private businessman in Sweden. I have my practical experience with difficult patients (adults and children, various illnesses) in several European countries during 20 years. During 45 years I am engaged in yoga.
The real yoga therapy is a path of a victory a children’s cerebral palsy!
Good luck!

Yours faithfully, Alexander

Ricahrd,
got your email, give it a go, i really think it will help.

It is not moaning to say that you are having trouble coping, it is simply being honest and saying look we need help. So many people I am sure feel the same way but can’t bring themselves to admit it, we have probably been guilty of that in the past.

Routine keeps people sane but that is very difficult when Ellie has not found her routine yet even more so.

You seem to have a good idea about getting someone in to help, is this with Ellie as in respite for you or taking over the hum drum housework that always seems to pile up when you blink?

Has anyone advised you on the financial help you can get with this sort of thing?

I am going to take a look at her site on face book cptalk is on there too.

Finally for now, its ok to use this site to rant, its what its for, a place to let out all the litttle bits that we keep building up inside, so rant away.

Take care hugs to Ellie

Anna

Hi Anna

I’ve not received an e-mail as yet.

We have met a couple of other families in similar situations but their children are much older. We’re not really in regular contact with them but can keep in touch via facebook. There is a local group which has just started as well but we have not been able to attend much as Ellie has either had appointments or been in hospital, which is where she is again now (not for medical reasons but simply because we cant cope on a full time basis). We don’t have any brothers or sisters locally, my mum is recovering from breast cancer and Annie’s mum is 81 and lives 200 miles away, so we’re pretty much on our own.

I’ve reached the point where I’ve had to say that i cant look after her full-time in her present state (it’s like trying to look after a difficult new born every day) and I’m not going to discharge her until i get another plan in place. We’re thinking about possibly employing a home-help type person for a couple of hours each day just to keep on top of the general stuff, so that when Ellie does fall asleep, we can rest, and I’m going to talk to her consultant about a stronger/longer lasting sedative as we HAVE to get her into some sort of sleep pattern if she cant manage it herself.

When i read what I’ve written it sounds like I’m moaning and painting a really black picture but I have to say there are some happy times as well, just not enough to live on. I know none of this is Ellie’s fault and I love her dearly but just cant cope with her ALL of the time (I reckon she needs a team of four). But other people have children like Ellie and get through it and seem to have ‘normality’ in their lives, so at some point, there must be a ‘calming down’?

P.S I am already finding this site useful to just get stuff out of me.

Richard,

which part of the country do you live in? Have you been put in contact with any other parents or carers in your area?

I have sent you an email, if you dont get it soon please let me know or contact me by email through this site so I can resend.

It is an emotional roller coaster, some days better than others some days worse. Your care programme for 3 nights will at least allow you to get some much needed sleep, and make things a little easier to cope with. Hang in there.

I will contact you again soon once you have had a chance to get the email.

Take care
Anna

Hi all,

If you are disabled or the parent of a disabled child, the disability charity Scope would like to hear about your experiences of looking for work, house or flat hunting and disability-related discrimination, as well as your thoughts on the Paralympic Games.

There are now just a few days left to take part in our summer survey so don’t be left out – make your voice heard!

http://www.scope.org.uk/attitudes

Hi Anna

Thanks for the reply, it sounds as though Ellie has been given the same fairly grim prognosis as your son. At the moment we are struggling to cope with it all. She is also is a hip-spica until 15th sept and then has to go into a brace for a further four months. She doesn’t sleep for more than about 2 hours at a time and is often what the doctors call ‘irritable’ during her waking times.

We have a care package starting on the 6th september for three nights a week which will help on the physical side of things but its the emotional aspect we (me particularly) are struggling with.

I gave up work to become Ellie’s main carer as Annie’s job was much more secure but I’m now constantly doubting whether I’m up to the task. My anxiety levels are through the roof and I’ve now ended up on medication myself to try and help calm the feelings of what can only be described as panic and heightened nervousness.

People keep telling us that the first 12 months are the hardest and we are clinging onto to this fact, hoping its true. We love Ellie dearly but I spend many hours wondering whether she should really be here and blaming the medical profession for interfering with nature, which just creates emotional turmoil between love and guilt.

I cant see any light at the end of tunnel right now and feel so desperately trapped.

Any advice or tips (especially regarding sleep patterns, she is already on chloral hydrate (which doesn’t seem to work)) will be gladly received.

Sorry for sounding so glum 🙁

Richard

Hello Richard, Annie & Ellie

Sorry you have had to search us out but so glad you have found us.

Our son was born 9 nearly 10 years ago and we too knew from the beginning that he had CP. Our prognosis was bleak, but things have not turned out as bad as we were told. I am not saying that this will be the case with Ellie, as unfortunatley no one has a crystal ball, but I personally feel that sometimes doctors etc. give a very bleak picture and then anything better than that is a bonus. We were told that he may not be able to walk, hear, talk, see, and as for all the rest we were told to wait and see. True he has all these problems but not as black as we allowed our imagination to take us, after talking to doctors.

We took things day by day, some days better than others, some days we had to take hour by hour. Things got easier though I doubt I have really truly accepted the situation. We adore our son, he is a joy, his smile can light up an entire room, his humour makes you laugh and cry, he is infuriating, naughty, cheeky, he is a little boy.

It will be hard, but we can not imagine a world without him, we do wish things were different for him.

You will find a strength in you that you never knew you had, but we also found anger, fear, despair and a lot of other emotions that challenge us even now.

Use this site to put down any thoughts and feelings you want, vent your anger, share your joy (because there will be a lot of joy) here and hopefully we can share ours with you, and you will realise that you are not alone, and do not need to do it alone, we might not have the answers you need or want, but we will try to be there for you all.

Take Care and I hope to hear from you soon.

Anna

Hi, I have not used a forum before and am not really sure how it all works. We (Richard & Annie) had a little girl, Ellie in January this year and were told when she was five days old that she had suffered a ‘global’ (?) brain injury at some point before birth which would probably leave her at the severe end of the scale with all aspects of her development. I’m not going to rattle on about it as I hope I’m talking to people who have already been through all that. To cut to the chase, we were and still are devastated and living in a world of turmoil which just keeps spinning. We have medical professionals coming out of our ears and enough medication to start our own pharmacy. What we don’t have is a parent support network, normal people to talk to or ask for advice, or a place where we can just go when things get to much…if anyone can help, please do.

Many thanks

Richard

Hello all,

we are looking at ways in which we can advertise the site. I have arranged for an advert to go into the local newsletter sent out by the council to familes of disabled children, and was wondering if other councils did a similar thing. If you recieve such a publication, I would be grateful if you could let me have the name and a contatc number so that I can get in touch with them.

Many thanks

Anna

Dear Parents, Carers, and Professionals,

Below is a copy of an email I have received, should anyone be interested.

regards
Anna

This is a reminder from the Cerebra E-Learning Team to please complete our short 10 minute E-Learning survey to help us improve our services and provide you with effective and engaging online learning resources. Apologies if you have already completed the survey and thank you for your responses so far.

Please click on the following link to access the survey: http://www.surveymonkey.com/s/CEREBRASURVEY2011

For any survey assistance please contact EmmaT@cerebra.org.uk

Thank you.

Cerebra E-Learning Team

Belinda,

Please let us know how you get on, and if you decide to go with this, how it all goes. Take care.

Regards
Anna

Thank you both for the information.

Best Regards,

Belinda

Hi there,

I’m from Spain and I know about this technique. it is also available in Madrid, Spain.

A child of a close relation was operated six months ago in Madrid and for the moment they are very glad and satisfied to have done the intervention.

Belinda, I suppose that you know the web site, but anyway:
http://www.ulzibat.es/ulzibat_en/welcome.html

Regards, Fernandi

I have found the following on Ulzibat:

Valeri Borisovich Ulzibat is the name of the surgeon and researcher who created the technique known as Ulzibat Fibrotomy. In 1985, in an attempt to relieve the pain of a relative who suffered from muscle disease, he started to do some research and try several procedures. As a result, he developed the surgical technique known today as Ulzibat´s Fibrotomy. In the process, he devised and patented his own surgical instruments.

The Professor died suddenly in 2003.Even though the technique has been improved over the years, the lack of a key driving figure such as Dr Ulzibat, language barriers and some other circumstances have led to a slower advance of Ulzibat Fibrotomy technique outside the Russian Federation.

It would appear that the technique involves surgery and is only available in Russia. I personally would not be looking at this technique. It would need careful consideration and discussion with advisers here in the UK, a lot of research would need to be done as to its suitability etc.

Regards
Anna

Belinda,

Hello and welcome to cptalk.net

I am sorry but I have never heard of this technique. but I will ask around for you.

We use the Bobath technique and find it works very well for our son Harry.

Regards
Anna

Hi there,

I am a mother of a 11years old son. Since he was born, he is suffering paraparesis, a partial paralysis affecting the lower limbs.

I heard about a different technique, Ulzibat technique, which goal is to eliminate miofascials or muscle contractures, these contractures prevent movement and appropriate posture as well as the elimination of pain points of the patient.

I’ve read everything on the web site, but I would like to know, if someone knows about this technique, to let me know if that works or how successful are the results.

Thanks, Belinda8

No worries Anna,

Leonie is following a Snowdrop Programme developed by Andrew Brereton. She is showing great development in most areas.

All fantastic stuff that I hope I will have time to write more about soon!

Went swimming today and Leonie understands clearly her commands for holding her breath to go underwater! Astonishing!

Pierre X

Father to four daughters. Sasha my first when I was much younger and she is now 16. Then 3 daughters, triplets, born prematurely at 26 weeks 20/06/2010. Beatrix, Shylah and Leonie. Leonie had various issues and has cp.

Hi Anna,

Bungalows are elusive aren’t they and overpriced!!

We just got an electric chair and we can’t lift it in so we’re going to have to have a hoist, we have a transporter. So room is not a problem just lifting.

We got a quote for a car seat also £1500!!! It needs to swivel for my back, but so much money, back to the chairities!!!

Does this ever stop? Your a few years down the line from us, does the equitpment ever slow down? Feels like one thing then another. I’m feeling the strain a bit at the moment. And looking for the right property ahhh!

Maria.

Mum to Sammy nearly 5 with Spastic diaplegia from pre eclampsia and Beth 3 with slight right hemi from a stroke.

Pierre,

Thanks for ideas on site, will try to organise.

Glad to hear you have had some developments at your end.

Take care
Anna

Maria,

No our car has not been adapted. I have a Zafira which gives a bid boot and it high enough so that we don’t have to keep bending down to lift in and fasten etc.

We too are looking for a bungalow but they apper to be few and far between.

Regards Anna

Under Forum there is currently one area called “Welcome”

Please could you create some new areas for discussion. Obviously this is flexible and initially its really to see how it goes plus this might need putting in order:

General Chat
Equipment
Support Groups / Locations
Events
Therapies ie OT, SALT, Physiotherapy, Neuro Developmental Therapies

Thanks,

Pierre 🙂 X

Father to four daughters. Sasha my first when I was much younger and she is now 16. Then 3 daughters, triplets, born prematurely at 26 weeks 20/06/2010. Beatrix, Shylah and Leonie. Leonie had various issues and has cp.

Hi Anna,
We are thinking car adaptations as Sammy just got his first electric wheelchair and house changing as he gets heavier and wanting to be more independant.
Have you got car adaptations? If so what did you go for? Also, do you live in a house or bungalow? Just interested to see what other have done to make their home CP friendly – ours is the worst possible!!!!
Glad you liked the Josh Blue, I did like the interviews and those are something I would show Sammy one day, simply as his language is a little ‘blue’ in places!

Mum to Sammy nearly 5 with Spastic diaplegia from pre eclampsia and Beth 3 with slight right hemi from a stroke.

Maria,
Great, a very funny man. Trying to bring H up with a laugh with me attitude Josh seems to have. Will let H have a look at one or two of the shows.

I also remember a girl comedian a few years ago, but can’t remember her name, she is English and appeared in an episode of The Extra with Ricky Gervais.

Hope all is well with you and yours take care.

Anna

Hi all,
I have discovered a commedian who won last comic standing, I think in 2006, some may have heard of him. I think he has an incredible sense of humour and incredible way of looking at himself and his CP or palsy as he calls it. Clips of him are on you tube, but as a parent, taking all my fears and worries for my children, both with and without CP into account, he puts it in an amazing way. There are 6 interviews with him, where he talks about life, his school experiences, his wife and impending child. He is an encouragement.
Take a look and tell me what you think.
Maria.

Mum to Sammy nearly 5 with Spastic diaplegia from pre eclampsia and Beth 3 with slight right hemi from a stroke.

Pierre,

sorry for not getting back sooner, been away with no access to broadband or mobiles. Great Fun.

Thanks for joining. I have sent you an email.

Why has Leonies CP not been diagnosed? I have come across a few people who have had problems with this.

We would love it if you have any ideas about building cptalk awareness.

Take care
Anna

Hello Anna and Everyone!

My name is Pierre and my wife is Liz. We had 3 daughters on 20/06/2010. They were born prematurely at 26 weeks.

Beatrix, Shylah and Leonie all had a rough start with Leonie having the roughest start of the three.

Leonie had various degrees of problems (which I will probably go into at a later date in more detail) which meant that she now has (undiagnosed)cp.

Liz and I have been extremely proactive with Leonie and she has a regime including lots of developmental exercises and physio.

My background is in anatomy and physiology as I was a Personal Trainer and more recently I completed a degree in Nutrition BS.c Hons. Previous to that, about 5 years ago I had been working in IT.

My wife and I have both been discussing (when we get 5 minutes!) the lack of a good CP forum for parents and those with CP and would be very interested in encouraging the use / growth of cptalk.

Do these forums have the opportunity to send PM (private messages)?

We currently use the Bliss forums and Tamba forums so know were things could be better and know of the input from the users there. I have also used other forums that worked very well.

Look forward to hearing from you!

Pierre 🙂

Father to four daughters. Sasha my first when I was much younger and she is now 16. Then 3 daughters, triplets, born prematurely at 26 weeks 20/06/2010. Beatrix, Shylah and Leonie. Leonie had various issues and has cp.

Hi everyone,
in an effort to get this site ‘out there’ a bit more i have created a page on FACEBOOK, so if you have the time take a look, like it and pass it on. Any ideas to promote our cptalk site would be appreciated too. Take care all have a happy day

Anna
x

Its just so confusing. It makes out like disabled people will be better off, but this is the government who are making a tonne of cuts! I just don’t know.

Mum to Sammy nearly 5 with Spastic diaplegia from pre eclampsia and Beth 3 with slight right hemi from a stroke.

Hi Maria,

First the scope site. I will be letting Harry know about this tonight, he has recently been reading a book called The Sky’s The Limit by Susie Bennett. Susie has CP and is a local lady and reflects her feelings. He is taking more of an interest in his CP than ever before at the moment, maybe because he is getting older.

The changes to DLA, yes well as I understand it they want to replace DLA with PIP, Personal Independence Payment. I don’t think it will effect those who have a life long condition such as CP, but as we all know each person with CP is different and their needs are different. They say they will take into account social attitudes and equality legislation. Mmm.. Does this mean that as it is a legal requirement not to discriminated against a person with disabilities say in the workplace that it actually happens, of course not, so will an adult who is able to work even with his disability but can not obtain employment due to his disability be penalised on the amount of PIP he receives?

I understand that they are still considering whether to reassess children. I will find out the link and let you all have it to read through.

So I found the reform papers and saw I was too late to answer their questions. I’m not sure how the changes really will be changes for those of us with children with such lifelong conditions. What do you think?

Having the equiptment we have to use and carry about is certainly a good thing, but it also seems that they think too many people get DLA and want to cut it somehow. So I’m confused. Does anyone have any strong feelings either way?

Mum to Sammy nearly 5 with Spastic diaplegia from pre eclampsia and Beth 3 with slight right hemi from a stroke.

Hi Anna,

Where do I go to fill in the questionairre?

Maria

Mum to Sammy nearly 5 with Spastic diaplegia from pre eclampsia and Beth 3 with slight right hemi from a stroke.

We are a small charity that fund special needs equipment in the UK for children with disabilities. Please see our website http://www.hcag.org.uk for more information.

Hello all,

It is all over the news, and brought very much to the forefront via mumsnet.com. DISABILITY LIVING ALLOWANCE REFORM.

The Government is proposing to replace DLA with a new benefit PIP (Personal Independence Payment) and are asking us to respond to questions they have asked in relation to how they might change the benefit. Please have a look through and respond if you can, they more they get from the people it affects the more chance we have of them actually listeneing!?

Regards
Anna

Today Scope is launching a new online forum for young disabled people. This is a secure place to talk, share ideas and information and raise concerns with peers.

The forum, Meeting Point, has been set up as part of Scope’s young people’s project Trendsetters, developed to highlight priorities for support and information and enabling young people to work with us to produce resources that will be available to other young disabled people facing similar challenges in their day to day lives.

Meeting Point can be accessed via Scope’s website at http://www.scope.org.uk/meetingpoint or by contacting Scope Response on 0808 800 3333.

And why not pay a visit to our new young people’s pages which Trendsetters have been contributing to. You will find “day in the life of” videos, useful contacts and Meeting Point at http://www.scope.org.uk/help-and-information/young-people.

We look forward to seeing you there.

Scope Trendsetters Team

Thanks, The cold weather is horrible. Sammys feet get so cold and the plastic of his splints makes it colder sometimes I think.

Mum to Sammy nearly 5 with Spastic diaplegia from pre eclampsia and Beth 3 with slight right hemi from a stroke.

My Joshua has had a horrid time whilst its been snowing lots of crying, we did find these socks that have different togs – like duvet socks- we didnt find them in joshuas size and I’m a bit useless at being creative but a friend made them smaller for us Josh only has little feet 🙂

Due to the horrible snowy weather (we think) We have a really unhappy little boy. He’s OK if we stay in and keep the heating on all day, but we went out for a 2 minute wak earlier and he came back in tears.

Who has had experience of the cold weather with your childs CP or even your own CP? What can we do? What do you do?

My Sammy wears extra layers and someone suggested putting a hand warmer in his cosy toes, but it also seems to make him very very tired. Way beyond normal. Also has anyone experienced pain with this. He cries as if in pain but says no when you ask him, however he says no to most things, even when he means yes.

Any input will be very much appreciated.

Mum to Sammy nearly 5 with Spastic diaplegia from pre eclampsia and Beth 3 with slight right hemi from a stroke.

Hi,

I can nor say that I have experienced the same things as you. CP is different for everyone, which is frustrating. What we do all have in common however if the love for our children and the sadness, frustration and anger we sometimes feel on their behalf and no it is not selfish to feel them for ourselves and our families too. It is ok to feel what we feel, it is what makes us who we are.

You are getting little sleep, have you tried to get help from social services? can they provide respite in the home in the way of a night nurse/carer, someone to take care whilst you get some sleep.

keep on at your consultant to get answers for these, are they seizures or night terrors? what medication can be tried. Something you are already doing I know, but at least if you hear someone else saying they would be doing the same thing, it can help you feel a little better.

Keep coming back to this site, someone out there must be going through or have gone through similar experiences, and may be able to give more help, advice and support.

Important, remember you are good parents, you have a beautiful family, you can rant and shout here as much as you like, we understand.

Anna

HI.. I am new to all this. My som is 13 months old but was born at 24 weeks so corrected he is 9 months.
He does not reach for toys, he does not sit, he barely hold his head up and although never been a great one for drinking, now refuses all bottles and has an NGT and still screams while feeding using that. He can smile and laugh but doesn’t make a lot of eye contact. He has been diagnosed as having evolving CP

That is all fine. We can cope with that. This is what we can not cope with.

He goes stiff and screams (not cries) for up to 9 hours a day, 18 at worst, usually getting very hot/clammy. He used to sleep ok at night, waking on average 2-3 times. Now we don’t even get that relief. It is beyond ridiculous with no sleeps greater than 2 hours and more often than not, waking every 45 minutes screaming. He prefers his tummy (Naughty I know but we have a motion sensor) and when he screams, his arm and wrist twist backward, his legs scrunch under him and he sounds in agony. Picking him up will help a wee bit sometimes but co-sleeping does not. He will drift off quietly, then suddenly tense and scream.

We have literally been up about 20 times per night for the last month. 10 at best. With a 2 year old and no family around us, we are going insane. We can not live any form of life, I can barely get to the supermarket. My husband works 10am to 9 pm or later and commutes. We tried phenobarb, no change. We are no baclofen which seemed to work a bit initially with the screaming at least. And now have epilam as well but has made no difference so will ask about at coming off that.

Does any of this sound familiar? Is it all CP related (Does everyone wish CP just had a definition so there was black and white and you knew what to expect, or just me as a newby to all this) or should I keep harassing his doctors for answers? We have had neuro and gastro specialists who have all put hands up and said “Nothing to with ” but I am struggling to accept there is nothing to be done.

Thanks so much for taking the time to reply and share your experiences. Any other info re CP and young bub would be MUCH appreciated. I feel so sad for him and then i feel guilty for feeling sad … BLAH. Even writing this I know it must sound like I am an evil, undeserving parent but it’s just desperation coming through, I promise.

try this one:
http://www.speedsurvey.com/survey.aspx?u=4638E9DE&cb=DC1F34

Hello Maria,

Thank you for your kind words, On the whole I am fine with dealing with things but like you said it does get you down from time to time and when it does I just feel a little lonely. So thank you for taking your time to reply!

Cheers

Phil, Dylan’s Dad x

Dad to Dylan the little legend!

Hi,

Just wanted to add that your still quite young to be dealing with this, its big and its life changing. I think your doing well!! How I would of coped at 24, I don’t know! so take courage. (thats a compliment!) Being young is no bad thing, just cut yourself some slack.

I have grown so much from my experiences, so I think you can, like we all do, allow it to get you down from time to time, so long as you use it to grow as a person and use it in Dylans favour.

From what you’ve written, you are mature and handling this with wisdom beyond your years. Keep it up!

Maria.

Mum to Sammy nearly 5 with Spastic diaplegia from pre eclampsia and Beth 3 with slight right hemi from a stroke.

Hi Maria,

It certainly does include parents. If you select “No” for the question “Are you a disabled person?”. The next question is then – “Are you filling this in on behalf of a disabled person?”, then select “Yes”.

Thanks so much for taking the time,

Alex

Hello,

Thank you for your advice ladies, I live in Wallasey on the Wirral. I know that I should be thinking of what he can do and i do most of the time it just seemed that recently things were getting me down but im feeling much better now.

Thank you for taking time to reply to me and thank you for you advice.

Thanks

Phil, Dylan’d Dad x

Dad to Dylan the little legend!

This didn’t seem to include children, do you still want us to fill in as parents?

Mum to Sammy nearly 5 with Spastic diaplegia from pre eclampsia and Beth 3 with slight right hemi from a stroke.

Couldn’t get to the survey, sorry.

Mum to Sammy nearly 5 with Spastic diaplegia from pre eclampsia and Beth 3 with slight right hemi from a stroke.

Scope needs your help to make sure the true costs of being a disabled person in Britain today are fully realized. We need your input to help shine a light on the costs involved.

Please help us by sparing just 10 minutes to answer a series of questions online that Scope will use to help put your case to the Government before it’s too late.

http://www.comres.co.uk/surveys/disabledpeoplespanel/

We thank you in advance for you donating your time and knowledge.

Hello,

I am a final year product design student at Northumbria University. For my major project I will be designing a portable toilet seat adaptation, aimed at children between the ages of 3 and 10, which have Cerebral Palsy. The aim of the product will be to help the child take part in normal everyday living activities; activities which necessitate travelling outside their homes, including taking part in school and family outings. By having something like this it will reduce the need to just put the child in nappies, which by doing so sets all their prior toilet training backwards and also reduces their independence and dignity. The main criteria for the product will be for it to be portable, supportive, stable in use and also affordable.

At present I am still researching the area and feel that a questionnaire aimed at the families, parents and careers of children that have Cerebral Palsy would be a good place to start, to get a further understanding of the problem. The questionnaire that I have put together is an online questionnaire and it can be found at this link:

http://www.speedsurvey.com/survey.aspx?u=3E7910D3&cb=EBA31A

I would greatly appreciate it if you are able to take the time to fill this in and help me out with my research.

Thank you for your time,
Cheers
Joe

Hi Phil,

Great advice from Maria, I dito all she has said. Which part of the country are you from? Maybe someone in your area can point you in the direction of play groups etc. where the kids not only get to interact but so the parents.

Regards
Anna

Hi Phil,

My son is 3 in January, he has spastic diaplegia, CP. And I can sympathise it get you down. BUT! My advice to you is to not look at what he can’t do or what they say he will never do but look at what he can do and how far he has come. My boy had severe developmental delay but has overcome in an incredible way. He has caught up in all areas except the physical. He has been assessed as being GMFCS III, which means he will never stand without help, walk without assistance, he will be able to be independant but will need adaptations, and may need to rely upon his wheelchair as walking any distance will be difficult. He is happy, bright, handsome and determined. He started at a special nursery recently and loves it, where they are fantastic with him. Many things are different for us and him, but my thoughts are that so long as he is happy and fulfilled, then we have done our jobs as parents. Frustrations await, I am sure questions await too, but don’t let the can’t get you down, because every achievement will be so sweet.
Tell me more about your boy, where is he at? Keep in touch 🙂

Mum to Sammy nearly 5 with Spastic diaplegia from pre eclampsia and Beth 3 with slight right hemi from a stroke.

Hello,

As I have put in m,y little bio thingy, I have a 2yr old son who is a little legend but now he is getting older and still very behind developmentally (physically) I am starting to struggle to cope. I love him to bits and absolutely love playing with him but I am starting to struggle with feelings that he is missing out on what most little boys can do ie, using his hands to play, sitting up talking and so on. He is also in the process of getting a tube put in to feed which i seen as another kick in the teeth.

Like I said he is a little ball of joy and really enjoys life which is why i want to see if anyone can offer me some words of support or how you feel you dealt with any of this if you have been through the same so that I can stop feeling sorry for myself and get back to concetrating on having fun with him.

Would love to hear back if anyone is out there lol.

Cheers

Phil

Dad to Dylan the little legend!

Hi All,

Its been a while, how is everyone and their small people? Sammy and his sister are doing well as he settles into his new nursery I have no time to stop with team around the child meetings and decisions about the future to make, but Sammy continues to be a pleasure and now has his wheelchair.

Maria x x

Mum to Sammy nearly 5 with Spastic diaplegia from pre eclampsia and Beth 3 with slight right hemi from a stroke.

Hello Harry,

I loved my Therapists, We met Katy, Marie and Yollie (I don’t know how to spell her name S&L), They were so helpful and worked me really hard. They were so honest but in a really kind way.

We had funn, although mum makes me do new things now which I find too much like hard work!

We want to go back next year, do you think you will go back?

Love Sammy.

Mum to Sammy nearly 5 with Spastic diaplegia from pre eclampsia and Beth 3 with slight right hemi from a stroke.

Sammy,

I am so glad you and your mummy enjoyed your time at the Bobath Centre. I bet you had to work really hard, but it is worth it in the end. They helped me to hold my knife and fork much better and I can cut up some of my own food now.

My mummy liked it when they gave her little bits of advice on how to help me even more, and both her and daddy, and even my little sister now nag me about things!

I hope you try really hard to do the things they said would help you.

Take care.

Love Harry
age 8

Back, and it was worth every penny. Tough, but we will be trying to get back again. If only the community people were able to work together like they do at Bobath. Some home truths, but they were so much more honest with us than anyone else ever has been, and more accurate I think. I would recomend it to anyone and Thank you to everyone here who’s encouraged us.

Mum to Sammy nearly 5 with Spastic diaplegia from pre eclampsia and Beth 3 with slight right hemi from a stroke.

Hi Anna,

Sammy has been lent a Kettler Trike. Its been adapted, it has foot plates put onto it. BUT the seats have a bigger bucket / back. Much less bits than a tomcat. I looked and they have some on e-bay and other online places. But my son is 2 1/2 and so it might be a bit small for Harry. However there are different ones. Hope this helps x x

Mum to Sammy nearly 5 with Spastic diaplegia from pre eclampsia and Beth 3 with slight right hemi from a stroke.

Maria,

It will be great, these are very special people who deal only with children with CP, so they have seen just about everything.

Even if you get only 1 peice of valuable information or advice it is worth it. (I am expecting you to get more)

I hope Sammy enjoys it, Harry usually does and often asks when is the next time we go, so can’t be bad.

All there are very friendly, you get to meet other families, the family room around lunch time is usually a hub of activity. It is great for the kids too, they have the chance to see other kids doing things ‘a little differently’ H liked to see the other children using the same stuff he uses or had used in the past.

It can be hard work, and if you are away from home a little difficult to fill in the spare hours, but there is a play park nearby, entrance through the woodland path near the rail bridge. depnding on your mode of transport there is also a leisure park the other end, with cinema, bowling, restaurants etc. and you can get the tube into London itself, if you can manage and face it. Obviously lots of things to do there.

Let us know how you get on.

Take care
Anna

We’re going! In 3 weeks time! I have no idea what to expect, but we shall see!

Mum to Sammy nearly 5 with Spastic diaplegia from pre eclampsia and Beth 3 with slight right hemi from a stroke.

Hi Anna,
Whizzkids are the best charity for trikes, they supply direct, so might know of a different company. Mission Cycles also make specialist trikes. But it doesn’t have the brake feature but is cheaper.
Don’t know if this helps, we will be going for the tomcat as the physio has recommended them and I like the braking. But I would imagine at 2 1/2 Sammy is Smaller and his needs are too!
Hope this helps.
Maria x x

Mum to Sammy nearly 5 with Spastic diaplegia from pre eclampsia and Beth 3 with slight right hemi from a stroke.

Hi everyone,

hope you are all well, it has been very busy around here, what with school end of year activities etc. We are looking to get Harry a new bike and wonder if anyone can reccommend one, we have looked at Tom Cat but thinks it may have too many attaachments for his needs. We are looking for a trike with easy to use brakes and a simple set of gears.

Give me a shout is anyone has any ideas.

Thanks Anna

So we had a bike assessment, and Sammy had his first ever taste of independance! He RODE A BIKE! He cant walk!, or even sit unaided but he managed to ride a bike! It was amazing, the chap put all the supports in place and the bike is power assisted, but it gave him such a sense of freedom! So now I am on the look out, Our quote was £1080! We will be asking for charitable funding, but if anyone knows of a Tomcat trike, no longer used, please pass details onto Anna, because even if its no good to Sammy, it will be good to someone! It was an amazing experience, independance is one of the biggest things my boy lacks and this was one step closer 🙂

Mum to Sammy nearly 5 with Spastic diaplegia from pre eclampsia and Beth 3 with slight right hemi from a stroke.

ITEMS FOR SALE

OK for now, anyone wanting to pass on free or even sell items, please email me with details. I will then put it onto Resourses page under a special heading and if anyone wants it I will pass their info onto the seller via email, this way we can still protect ID from general public, and you can discuss items direct with each other and arrange all the finer details.

Regards Anna

Hi everyone,

I totally agree about needing somewhere to buy secondhand equipment/toys. I can’t believe there is nowhere that this can be done. There seems to be so much stuff that is only useful for a short time but costs so much.

Ruth, Mum of Adam, 4 and Edith, 20 months, who has spastic quad cerebral palsy and is going to achieve great things

Hi Anna,
We also need addaptations as Sammy cannot balance to sit nor can he use his feet indpendntly of one another. The idea would be to help him with this. His physio suggested we go for the assessment, take the advice from the Tomcat man, then look for one which a someone had grown out of, which is why I approached Cerebra as I knew they had funded Tomcats before and wasn’t sure if they had the equiptment they paid for back. I shall approach other charities too and Yes a page of second hand equiptment is something I would look at and use. I don’t think that there should be a problem with it as long as you get your OT/Physio to check it out. To me, anything which our PCT won’t fund, it would be great to have a place where you can look for quality cheaper things. Its sad that some things, like the trike, which I am told will only last him at most 2 yrs based on the rate he grows, cannot be used to their fullest.
Maria.

Mum to Sammy nearly 5 with Spastic diaplegia from pre eclampsia and Beth 3 with slight right hemi from a stroke.

Maria,
We are in the same boat at the moment and looking for a suitable trike for Harry. We are leaning towards Tomcat as well. Cerebra may not be able to tell you where you can get second hand ones from, as they are all custom made to each child, but they do offer grants for cycles, you can get their application form from their website.

We got Harry’s current trike from a family whose daughter had out grown it, but it has no big adaptations to it, but he needs 3 wheels for balance, and need easy brakes as he can not grip normal ones that well.

It is a shame that there is not a place for good quality toys etc. that could be sold on, maybe we should put a page on this website? would anyone use it?

Regards
Anna

Hi,
I am looking to get help and hopefully help others! We are looking at getting a Tomcat bike for our son who has diaplegia. Seems to me that we need a way of recycling the ones no longer in use. They are very expensive and I would be looking to buy the Tomcat from anyone whos child has outgrown it. We are having an assessment to see what bits he will need on his bike and then I want to look to see if anyone else has had a similar/ the same bike. Does anyone know a place where people share this kind of information? Ones for sale or charities who pass them on? Cerebra wern’t that helpful. Or is anyone looking to sell on or pass on a bike?

Mum to Sammy nearly 5 with Spastic diaplegia from pre eclampsia and Beth 3 with slight right hemi from a stroke.

Hey guys I just wanted to share with you a documentary that I made about my friend with cerebral palsy. She has gone to uni to study dance and movement despite her disability – GO NIKKI and inspiration to all!


Hi,
We have been given a specialist chair from our OT called a Krabat Jockey, made by R82. It is the first one to be used in our area and our OT has given us all the reasons for the chair, mostly he is aiming to avoid hip surgery in the future, although there are more advantages than that. However he has never used one before and we are concerned about the disadvantages. They are unknown. Its a saddle seat, which pulls his legs down underneath himself. He loves it and seems very comfortable in it but has to work hard. Doe anyone have any thing like this – A chair which is a saddle seat? How is it going and what do you think?

Mum to Sammy nearly 5 with Spastic diaplegia from pre eclampsia and Beth 3 with slight right hemi from a stroke.

Hi,

What area are you in?

Regards Anna

Hi, my son is 9 years old and has CP. He walks using sticks or his rollator. He is in mainstream education and loves all the things other boys are in to – Nintendo DS, football, lego arguing with his parents etc. He also loves riding his trike. He goes to cubs and is a strong swimmer.
I am looking to try and find someone else similar that he could maybe play with from time to time. He is very sociable and all his friends are able bodied, which is great but it would be nice for him to get to know someone with similar problems to him.
Cheers and thanks.

Hello all, we are having a rough time with our son and his behavior/mood swings. He’s 15 and mobile without a mofo’s or a chair. We do take his chair if we go out and have to walk for a long distance, such as the Mall. Anyway, his behavior is out of control at times and after he has a temper tantrum for lack of a better word, at one particular time I asked him why he was acting like that and he looked at me and told me he did not know, this broke my heart as I truley believe that he just can’t turn it off once he get’s worked up.

We have him seing a psych doctor who just put him on a medicine called seroquel 25mg. he was previously on respiradole which had a side effect on him and started to produce man boobs (lol), so he was taken off of that.

Sorry for being long winded, just wanted to know if anyone else is experiencing anything like this and if so, what meds have or have not worked.

My wife and I are 39 and we have 3 children of which our baby boy (15) has a mild case of C.P.

Thank you for that Anna, I hadn’t even thought about that! Sammy throws his head backwards which I think would be the opposite of your Harry. Its made alot of sense!!!Positioning is so important. This site is invaluable – Thank you

Mum to Sammy nearly 5 with Spastic diaplegia from pre eclampsia and Beth 3 with slight right hemi from a stroke.

Hello all,

eating does seem to be a problem for many children with CP. As I understand it eating and speech are closely linked, it is the musles, i.e. lips, tounge throat etc. that can cause the problems. Harry used to have big problems with mixed textures baked beans or cereal and milk were quite messy, even now he prefers to eat each texture from his plate separately and has problems moving food around his mouth, hence if he has to chew too much he does not like it.

All children go though their ‘faddy’ stage where they simply will not eat certain things, it is often difficult to decide if it is just a stage or part of their CP, we simply keep revisiting certain foods. When he would only eat smooth foods we tried pureeing everything to check if it was texture or tases he did not like, quite a few were taste.

One thing a speech therapist did say to us that the position of the head is very important for eating, not just for the obvious choking hazard but to encourage the chewing motion. we were told that the head should be looking forward, Harry used to tip his chin down, and still will if we let him get away with it, this made it difficult to keep food in his mouth and the chewing movement was difficult too.

I am going to try and get some more information for the site articles so if anyone has any good tips please let me know.

Take care all.
Regards
Anna

Hi Both,

Thank you for replying. Have any of the specialists you have seen commented on if there is a link between cp and eating habits. When Louie was 1st diagosed his consultant said that the area of damage to his brain may well be responsible for the swallowing problems Louie has but that it would be very difficult to confirm. Louie also always has to some juice whilst he is eating I think this helps. Has anyone else noticed this?
Again thanks so much for your comments , sometimes I feel so in the dark its nice to chat to other parents who understand.

Sam

Hi,
Its interesting to see how lots of CP children seem to have eating issues. My Sammy weaned really well but since he turned 2 has decided he doesn’t want to eat and now gags on food. But not food he likes – Lasagne, crisps etc. He was never good with small bits as a baby but that I was told was because he was in a tumble form chair which make swallowing bits more difficult.
I am struggling to know if his new eating problems are because he’s 2 and finding his determination or if he has a problem. We’ve been told to watch, monitor him and not to give into him. Its so hard when he’s eaten so little!
Ps a good high calorie crispy food is Nutella on toast 🙂

Mum to Sammy nearly 5 with Spastic diaplegia from pre eclampsia and Beth 3 with slight right hemi from a stroke.

Sam, this is wierd, my son also has mild cp, but he does not do sweets he just wants fried foods and then just the skin. Hashbrowns are also his favorite, it’s frustrating because he is not gaining weight. I understand how you feel, as it appears we are going thru the same thing to a certain extent only my son will be 16 in Aug. Hopefully since your son is younger, you may have better luck at changing his eating habits.

I was talking to a dr. and was told to try toast, which he will eat but with peanut butter on it, i’m going to try and see what happens. A Dr. also told my wife and I that we should just not give in and attempt to force him to eat what’s on his plate. He told us that a child can go up to and in some casses 24 hr.’s without eating, meaning just wait him out. I’m still doing research and will post any results when and if I find any.

Good luck

My wife and I are 39 and we have 3 children of which our baby boy (15) has a mild case of C.P.

Hi All,

I am new to this site, But so glad I found it. My son Louie was diagnosed with mild cp, spastic dipegia last year aged 3. After some concerns over him walking or running on his toes he was refferred straight away to an orthopedic surgeon/peadiatrician. He had to have 7 weeks of serial casing and now wears afo’s (splnts) everyday. I am very worried about his eating habits as he too eats very little and will only eat certan textured foods. Whilst eating he often gouches and I can not ge him to try new foods now because of this. He will eat cakes and sweets fine which makes me question if this is linked but after reading your thread I think it may be. Also he gets very upset if I alter his routine. I have so many questions and would really like to hear off any one in a simalar situation.

Thanks

Sam

Our guy seems to only like crunchy foods, and it’s even hard to get him to drink the ensure plus. We don’t know what is going on, our dietician actually recommended he see a pyscologist which we have an appt for this week. On top of this he is having mood swings and that’s getting really out of hand so it’s a good thing we are going to see the doc., he was on respiradal for behavior about a year ago, but there’s something in it that effected his hormones and his chest began to swell so we had the doc take him off of it. We also felt at the time that his behavior issues were just him being him, but this is not the case. I am not a fan of this type of medication but we are at the end of our rope and it’s to the point that when he has these temper tandrums I have to walk away from him, but one the same note, he can be the sweetest child most of the time.

We go to the doc tomorrow to talk about the meds and diet, I will post the outcome.

My wife and I are 39 and we have 3 children of which our baby boy (15) has a mild case of C.P.

Hi,

Sammy has problems with textures, Mash potato is one of the wost. He hates it when it gets on his lips, this causes hyperextension and alsorts!
One thing that really works is Yogurt drinks in a cup with a straw. Good taste, high calorie and no real texture to worry about. We give them as a reward or pudding. They might be a good interim until you see the specialist.

Mum to Sammy nearly 5 with Spastic diaplegia from pre eclampsia and Beth 3 with slight right hemi from a stroke.

Hi,

Our son is 8 years old and we are having the same problem. He had always had a good appertite until he started taking his medication for epilepsy this seemed to shrink his appertite. We are waiting to see a dietician, we hope to get some high calorie drinks for him to have once a day in the hope we can get a lttle weight on him.

Texture can somethimes be a problem, use full fat things for sauces etc, pasta with cheese sauce, use butter in mashed potato etc.

We try to us as many calorieds down him as possible each day. Cheese is good and a lot of the stuff that is ‘bad’ for him. Added to this is his little sister wanting everything we give him, which is not what she needs. Harry also loves vegetables and fruit and would rather eat these.

Harry uses so many calories/energy simply moving about it is hard to get them into him at the rate he uses them.

As soon as we speak to the dietician I will let you know what they say, and pass on any ideas.

Regards
Anna

Hello all, our son had a mild case of C.P. and he is almost 16, but he is so under weight and we are having a rough time getting him to eat. His favorite things are mcdonalds chicken fingers and fries and hashbrowns. I was wondering if anyone has dealt with this and if so can maybe make some suggestions for us. We live in D.E. and are waiting for an appt. at A.I. Dupont with a psych. dr. in hopes that he or she can offer some advice.

My wife and I are thinking that it’s the texture of foods, but it seems the older he gets the worse this gets. I do apologize for being long winded….

My wife and I are 39 and we have 3 children of which our baby boy (15) has a mild case of C.P.

I have presued the Bobath for my son, Anna you mention you have a daughter too and had to leave her for the 2 weeks. I am in that situation too and would possibly have to leave my daughter with my Mum in Plymouth for the 2 weeks. How did you feel about it? The thought of leaving her for that long makes me want to cry! She is only small so couldn’t really come with us. I have decided the hardest thing about being the parent of a child CP is the decisions you have to make!

Mum to Sammy nearly 5 with Spastic diaplegia from pre eclampsia and Beth 3 with slight right hemi from a stroke.

Our OT has referred for an initial assessment. The letter said they were working on an 18 week target. But they were very busy. At the mo Sammy is in a Maclaren Buggy with a special insert from the OT but he leans to the right and cannot maintain ‘dynamic sitting’. We have to go to wheelchair service for it. Is that the same everywhere? I’m a little fed up of funny looks for having a ‘big’ child in a buggy and not walking, as Sammy look normal most people who meet him for the first time are surprised when he gets out of the buggy and doesn’t stand but lays on the floor. His leaning just looks like hes being lazy, its a little frustrating having others looks and judgements and ‘helpful’ comments. One person even suggested we use a baby walker ‘to get him going’!!

Mum to Sammy nearly 5 with Spastic diaplegia from pre eclampsia and Beth 3 with slight right hemi from a stroke.

Maria,

we got an appointment for Harry’s buggy through his physio referral and it was quite quick, they even had a buggy in stock to give us, this may be because he did not need any special adaptations as such. But you would think that the initial assessment appointment should be sooner than 6 months. How are you getting Sammy around at the moment?

Hi Mel,
From a prem baby angle his neonatal doc doesn’t have the right info to help you with the CP. Sammys neonatal consultant said ‘call it CP, call is developmental delay, call it what you like’ How helpful is that!!! We were then refered like you to the community where they made the diagnosis properly because thats what they’re trained in. Neonates can only do smalls. Be strong the community people should be helpful. We live in Plymouth and have a specialist health visitor wh is a mine of information. Do you have anyone similar? She also chases up apts for us. She is the link to the community. Ask. All the referals are normal, we were refered for lots of things then at least we were on the list if we needed it. And taken off if not.

I also want to know from other people outside Plymouth how long people have waited for a wheelchair or paedatric buggy? We are waiting and the letter said could be up to 6 months. Is this the same accross the country? Every other service has been so good – seems a real sticking point down here!

Mum to Sammy nearly 5 with Spastic diaplegia from pre eclampsia and Beth 3 with slight right hemi from a stroke.

HI Mel

Hang on in there! Doctors appointments can be very frustrating, and sometimes you feel as if you are going through a set of hoops to get just a couple of steps forward, but at least you are going forward. Community Paediatrics, I assume he means a consultant paediatrician? Which area do you live in? The process differs sometimes from Acute Trust to Acute Trust, if we know where you are someone else might be in the same area, and be able to give a bit more detailed suggestions, people to speak to etc.

The consultant said Harry would probably be a walker, this is great they do not say things like this very lightly and in most cases tend to look on the worst scenario. Keep pushing for the new appointment.

Take care Anna

Hi All

Well I am back from Harry’s appointment tday and still feel awful. The consultant app was his standard prem baby check up. The physio has written to the consultant with her findings. The Consultant after looking at Harry stated that yes he could see a significant problem with Harry that needs to be investigated further. He has reffered us to the community paediatric team for a proper assessment is this normal?? Although he did not say the word CP but I as a mother am now 100% sure he has CP. He said that harry may need to see an orthopaedic surgeon, again is this normal? He finished by saying that looking at Harry he feels he will eventually walk!! I cam eout feeling shell shocked really and still confused. To make things worse I have been reading way too much on the internet. I am worrying about brain tumours and all sorts (This stems from the fact I had cancer 2 years, Hodgkins Lymphoma grade 3B and 9 months of chemo). I just can’t stop worrying!! I feel guilty moaning as i know I am so lucky to have Harry. I would really appreciate to have some feedback on this :-))

Mel xx

Hi I am a mother of 4, Ben 8, Maddie 6, Ella-Rose 4 and Harry 19 months. I am also a student Midwife!!

Ruth
Not had first hand experience of botox but friends of mine have two boys with CP. Both boys have had botox – one of whom has also has spastic quad. Talking to them I think the main things to keep in mind when making a decision if its right is – does she understand whats happening? The injections as i understand are quite painful and the effects are temporary. Also will there be any long term benefits. Helping with therapy or weight bearing for the formation of hips avoiding hip ops maybe. We decided not to allow Sammy it until he was big enough to make the decision, but he has spastic diaplegia so he is different. He crawls and weight bears through his knees. If the help in the short term can make a difference then it might be worth it, you know your daughter, trust your instincts on this one. Hope this helps x x

Mum to Sammy nearly 5 with Spastic diaplegia from pre eclampsia and Beth 3 with slight right hemi from a stroke.

Hi Ruth,

Not had any experience with Botox for Harry, but I have heard good things about it, the effect as I understand it differs from child to child, and the length of the effect differs as well. Hopefully someone will have had first hand experience of it and get in touch with you here.

Mel,

No one understands their babies better then their parents, at least that’s what I think. If you think something is not right, then its not right, and you need to find out what the problem is so you can get on and deal with it. The consultant will not think you are a neurotic mum, you have genuine concerns over Harry and his development that need to be looked into. Good luck with your appointment, and keep in touch with us here.

Hope you all had a good, if wet and windy, Easter.

Take care all,
Anna

Hi all,

Been V. busy so haven’t posted for a while. Mel, my son Adam was born at 25 weeks and suffered from severe developmental delay. He has since caught up alot but has been diagnosed with mild cerebral palsy due to a bleed in his brain resulting in the stiffness in his right leg. This is nothing like my daughter, Edith, who has much more severe cerebral palsy and is unable to sit yet at 21 months. Adam’s diagnoses wasn’t so important to us as he seems to get there in the end. Because both my babies were very premature they were scrutinized from the beginning. We found that once we were in the system we were well looked after. Alot of the things you said about Harry seem to ring true to CP. This is such an unbrella term though and will not provide you with an outcome. Push for the assesments though.

Edith is going for an assesment for Botox next week. Any one had any experience of this ?

Ruth, Mum of Adam, 4 and Edith, 20 months, who has spastic quad cerebral palsy and is going to achieve great things

Thank you both so much for your replies. Both your children sound adorable and sound like they are doing so well :-).

I have managed to get Harry’s consultant appointment moved from June to next wednesday. I am so worried about going and the consultant making me feel like a neurotic mother! I have an inner feeling that Harry is not right and the fact I have 3 other children all of whom were also born prem and they did not suffer these problems. I found a website last night whicxh described Harry to a tee. My main findings with Harry are He sits to one side, his left leg is always bent,or he W sits. When i pick him up his legs go straight and tight, he can only stand on tip toes with his left foot dragging and can only lean on things to stand, his toes are flexed 80% of the time especially when eating. When he is asllep his legs usually cross at the ankles with knees bent. Speech wise he is definately behind but says mummy daddy, ball and bye bye.

Does this all sound familiar? Oh im getting myself so upset and worked up about not knowing. It’s nice to speak to guys like you who understand as at the moment I have noone to talk to.

Thanks Mel xx

Hi I am a mother of 4, Ben 8, Maddie 6, Ella-Rose 4 and Harry 19 months. I am also a student Midwife!!

Spot on Maria,

I forget prem. babies still need to ‘catch up’ with a full term baby and so can naturally be a lttle slower in some developmental areas, as the time developing in the womb is cut short. There maybe somethings that are not due to CP, but good advice to make the list and work on them all.

We have finally got sick of the NHS provision for Speech therapy and gone down the private route for a while, to give Harry a bit of boost with his speaking. We have found that he is good with single words but when he tries to get them all in a sentence his clarity goes. we are trying to build his breath support and stabalise his jaw at the moment. Will keep you all advised of his progress.

Hope you all have a good Easter.

Take care
Anna

Reading through the comments, just had a thought early babys quite often have different levels of developmental delay. Sammy has a touch only now – he used to have it severly and as he grows he is getting over it. Its related to his premeturity and some have it related CP too. I think the best thing we did was to write everything we were concerned about down and then we pushed and pushed for a consultant apt. We saw Sammys neonatal chap who was rubbish but he gave us a referal to a pedeatrician who was great, we talked through it all and answered the question, is it CP? directly! We took all the concerns and she put it all together. Anna is right about the different problems CP children can have but when a baby is prem its difficult to say what they will grow out of and what is a long term problem. Keep going – some days its good and some days bad but all worth it.

Mum to Sammy nearly 5 with Spastic diaplegia from pre eclampsia and Beth 3 with slight right hemi from a stroke.

Mel

Hello, our little boy also Harry, is now 8 years old, born right on time but with complications, so we had an early diagnosis. Our H has low tone, but even so we got him splints for his legs because he would stand on tip toe, these help to keep the heel down and also stopped his feet from rolling in. Keep up with the physio and althpugh the diagnosis will not make things different it can help with furure therapies, treatments, schooling etc.

There is a fine line where Physiotherapy meets Occupational Therapy, when you next see you physio or the consultant whichever is first try to get an OT on board as well, especially with regards to seating.

How is Harry with feeding? does he dribble at all? can he chew? and is he attempting to chatter yet? lots of qusestions I know, but Maria is right only a consultant will be able to diagnose but, these are a few more things theat children with CP can have problems with.

Hope this helpful and not too scary, take care

Regards
Anna

My son was born at 33weeks. And almost the same story. Except he is stiff from legs downwards. Yes to me it sounds like CP – look at all our stories – they’re all so similar. But a physio can’t diagnose only a doctor and then you have to push and get really pushy! Sammy is 2 &half now, just gone into a walker and will prob never sit like others but doing just great. Look at the stats for early children and CP and developing problems. You’ve missed nothing, diagnosis can take a while but it won’t change much if you’ve got physio already, just give you some peace. Hope this helps.

Mum to Sammy nearly 5 with Spastic diaplegia from pre eclampsia and Beth 3 with slight right hemi from a stroke.

Hi

Your site looks fantastic. I wonder if you could help me. My son was born at 31 weeks gestation. He is now 19 months old and has been refered for physiotherapy as he does not walk and was slow in reaching milestones. The assessment she made is that Harry prefers to use his right side he sits awkwardly he has tight ham strings and tendons. His toes are flexed a lot of the time and when he crawls his fingers are slightly flexed and rarely flat. Harry could only pull himself up using arms rather than use his legs. He is now starting to use his legs but stands on tip toes and his bottom sticks out. He is nowhere near walking or standing alone. I am sure i have missed something !! Although he has not been diagnosed i have have a mothers feeling that he does have CP he is due to see consultant soon. The physio says she can not tell me if he has or has’nt. I would really appreciate it if anyone could give me there opinion on what i have said.

Mel xx

Hi I am a mother of 4, Ben 8, Maddie 6, Ella-Rose 4 and Harry 19 months. I am also a student Midwife!!

Sammy loves the swings too – we have a thing called a special tomato which supports him in a swing, a bit of a pain but worth the smiles and laughs! The slide is also a favourite. We put him at the top and because the slide is slanted he can balance on it. He loves it! Do you need / have a sleep system? Sammys bed is raised at one end and thi made a world of difference to sleeping and resting in a good position.

Mum to Sammy nearly 5 with Spastic diaplegia from pre eclampsia and Beth 3 with slight right hemi from a stroke.

Hi
Had a great day yesterday enjoying the sunshine. We took the children to a brilliant ourdoor adventure park. Edith could manage to sit on the baby swings there, her first experience of being on a swing on her own and she LOVED it. We couldn’t get her off! She just kept laughing and saying ‘look at me Mummy’
We haven’t done hydrotherapy but go to a special swimming class with a few other children who have cp. It’s a modified version of Birth light. It’s one of my favourite things we do. The water is so freeing.
Must go as Edith is crying, not settling so easily at night at the moment, she’ll have to come downstairs and watch EastEnders with me!

Ruth, Mum of Adam, 4 and Edith, 20 months, who has spastic quad cerebral palsy and is going to achieve great things

My name is Claire Theriot Mestepey. I’m a wife and mother and I have cerebral palsy. I’m asking you to take a moment to read this and you believe in this cause, please vote. Two years ago I started Disability Insights, teaching disability etiquette to different audiences with humor and compassion. (http://www.disabilityinsights.com) I feel that having Cerebral Palsy, gives me a very unique perspective as I share my knowledge and stories.
As part of our program I taught this course at the Harris Co. Sheriffs Detention Academy until the new Sheriff was elected, and decided not to renew my contract. But while teaching this class, seeing the Cadet’s changing attitudes about Cerebral Palsy change right in front of me, I realized that my message of knowledge, understanding and never judging a book by its cover, may be needed to be heard at elementary schools as well. With this, I hope to win a Pepsi Refresh Everything Grant so that I will be able to start a kids program.
If you have a moment please look at my submission at http://www.refresheverything.com/clairetheriotmestepey and if you believe in my cause please vote. Or join our facebook group at http://www.facebook.com/home.php?#!/group.php?gid=341828767863

Thanks so much for your time!

Free time? Do you mean that you get an hour or so a day and then have amuse yourself for the rest of it? We have family we could visit. I wanted another parents view really. Therapists are great but I think that they don’t really understand what as a parent its like, however you’ve been there, which is so helpful. I shall mull over your info, thank you.

Mum to Sammy nearly 5 with Spastic diaplegia from pre eclampsia and Beth 3 with slight right hemi from a stroke.

Calling Everyone

I have been contacted by a dad who is British but lives in Australia, he is planning to return to the UK, Darlington I think with his 10 year old daughter who has CP. He is asking for help with details about who he should contact to get her into school and therapy etc.

Anyone living in this area able to help?

regards
Anna
CPTalk.net

Maria,

Hi we have had Harry to the two week blocks at the Bobath and can not praise them enough. Yes it is hard work but worthwhile. I have not heard anyone say bed things about the place. Costing is a hard one we paid about £3,500 (don’t quote me on this) and then we had to pay for transport there and back and a hotel for the two weeks. Last time H and I stayed for the full 2 weeks and David and out little girl Charlotte came down over the weekend.

The thing I found most difficult was the amount of free time in and around London you have, but we managed to get about quite a bit and even more so when the rest of our family were there.

We have always found something to bring back with that was really useful, and they advise you on so many things that I feel local therapists miss, they are after all working purely with children with CP every day and are a mine of information and hot tips on how to get the best out of each child.

Hope this is useful. I am sure they will be happy to take to you over the phone they have also been great with us.

Take care
Anna

Who has experienced Bobath? So far my experiences have been good but such hard work. We got an hours session which I felt was helpful. If we get the funding has anyone whoose had it thought a two week session was worthwhile? What are the costings as on the webiste they won’t quote as all children are different. What are peoples thoughts?

Mum to Sammy nearly 5 with Spastic diaplegia from pre eclampsia and Beth 3 with slight right hemi from a stroke.

Hi,
Brace yourself for Bobath but embrace it – I found them really helpful. We shall see how often we get to see Bobath here first as stying in London woould be nightmare. But if he gets to s point and stops we would push for some charity help. Sammy was 7wks early but they sould have taken him out earlier as he was oxygen starved before that.
We are getting there, better week this week and back at the hydrotherapy – I love doing that with him – do you have anywhere you can access it?

Mum to Sammy nearly 5 with Spastic diaplegia from pre eclampsia and Beth 3 with slight right hemi from a stroke.

Hi Maria,
Edith is much more affected in her legs than arms. She also has very low tone in her trunk. I am prepared for a hard slog at Bobath. We couldn’t afford the huge fees but have got funding from a couple of charities, Caudwell children and Cerebra. Have you looked into that? For me it’s best not to look too far into the future and take each stage as it comes. I’ve met some wonderful people through this, other Mums and professionals…that helps. My son was also born early at 25 weeks and is actually diagnosed as having cerebral palsy too although very mild. I’ve never experienced a ‘normally developing’ child. I think this makes me even more try to forget about what they ‘should’ be doing and just go with them, share the journey (that’s me on a good day!)

Ruth, Mum of Adam, 4 and Edith, 20 months, who has spastic quad cerebral palsy and is going to achieve great things

I live in Plymouth so I have a bobath trained Physio for Sammy, we get the big wigs visiting every so often for assessment and advice. We’re not entitled to two week thing unless we fund it, we cant really do that. We had an assessment and advice session and it was HARD, no two ways about it but sooooo worthwhile. Sammy screamed and wouldn’t coperate (he is 2) but she was so helpful and came up with some things my physio is afraid to try. All in all hard going but worthwhile and helpful. I think we’re futher away from walking than I’d hoped but now we have more hope and chance of actually achieveing this! He hates the exercises she has designed for him and that is taking some perserverance.
Its hard managing it all, I think I’m just a little fed up, which doesn’t help Sammy whose always so happy and smiley! Do you go through phases? It all seems to get so much then Im alright again. We have a 9mth old too. Its great to see development normally! Its great to hear what your up to. Thanks for the reply, in some ways I wouldn’t change Sammy he is wonderful, I’d just like to make life a little easier for him. Any tips anyone? He is a spastic diapelgic. With very low tone in his middle.

Mum to Sammy nearly 5 with Spastic diaplegia from pre eclampsia and Beth 3 with slight right hemi from a stroke.

Hi Maria
Good to hear from you. I understand so well the things you are saying. Sometimes you just want to spend a day relaxed with your child without thinking, ‘is what we are doing helping with movement, speech etc. etc.’ I miss just being able to enjoy playing with her with no other agender. I often try to set aside some time for concentrated work and let us both have some time off. This is helped by also having a 5 year old son who demands our attention. It is hard though, there is so much to fit in in the days. She’s supposed to go in her standing frame twice a day, sitting practice, rolling, tummy time, fine motor skills. If you do all this with sleeps, feeding, trip to shops, there’s not much time to spare! I think we need to remeber it’s just as important for them to have fun and do exactly what they want sometimes too. There’s so much ahead of them, I’m trying to make the most of this time before Edith starts to realise this.
We are booked into the Bobath for April. I’m stressing a little about itas Edith is not very happy about other people handling her (her physio can account for this!) I’m worried we’ll get there and she will just not want to work with them. It’s alot of money and alot of effort as we live along way from London. I am excited about it too though. I’m sure they’ve seen it all before. Did you go for the 2 weeks?

Ruth, Mum of Adam, 4 and Edith, 20 months, who has spastic quad cerebral palsy and is going to achieve great things

HAPPY MOTHERS DAY TO ALL MUMS OUT THERE ARE THOSE WHO REPLACE THEY MUMS THAT ARE NO LONGER WITH THEIR CHILDREN FOR WHATEVER REASON.

Hi, yup thanks for that. We’ve had all those people involved since he was 9mths although we didn’t know what it was. We live in a great area where service have been amazing and I can’t speak more highly of them. We recently had a Bobath assesment, it was hard going, but if we don’t he won’t walk. Has anyone else done this? Has it been helpful? – ours seemed to be, just need to see how the follow up goes.
How have you managed physio at home and allowing your son to be a little person – playing and just being? It seems Sammys play has to have an agenda and he gets bored and frustrated by this. I’m told he can’t just sit as he finds comfortable as its not good for him, does it get easier?

Mum to Sammy nearly 5 with Spastic diaplegia from pre eclampsia and Beth 3 with slight right hemi from a stroke.

Hello Maria and welcome,

I am so glad you have found us and that it has helped in some small way. With our little chap who is now 8 , we tried to treat him as any other child which is sometimes difficult, as you can tend to be a lttle over protective and need to do more for him than you would for a child with out his challanges, but we have encouraged to try as many things as he can himself.

We have found that the people, both adults and children, who have know him for a long time simply accept his differences as he in turn accepts ours. I understand your comment about ‘special’ and you are quite right all children are ‘special’ and should be treat so.

I have heard parents before say that while not ‘glad’ they are relieved to finally have a diagnosis which they are able to deal with rather than going through years of not understanding why so many things are not ‘quite right’. It does still feel pants, some days are worse than others, but to know that others are there who have gone through or are going through similar things, does somethines help, and whilst we may not have the answers we always have a ‘shoulder’ to lean on and an ‘ear’ to speak to if you need to.

Now you have the CP diagnosis, have you been put in touch with Physio, occupational and speech therapists? I personally thinks it is good to get them involved asap. Also there may be a number of groups local to you which you can get in touch with, Contact a Family if nation wide, details are on the Resourse page of this site.

It was nice to hear from you and I hope you stay in touch and let us know more about your young mans achievements in the future.

Take care
Anna

Hi am a mum to a two yr old boy with Spastic diplegia. We have just had our first bobath asessment. Unlike most it seems I found the diagnosis OK, it was a relief to know what was wrong and to know he had CP and wasn’t anything sinister. However the road seems so long and hard. Every time we seem to get somewhere something comes along and knocks his confidence or brings hm back. Watching him grow and begin to relise he’s different is hard going. How did other mums help their children with the realisation their different without being patronising ie – ‘your special’ So many people tell me that and I hate it – all babies are special! Looking at this site – thank you ts great – feel so much less alone an isolated.

Mum to Sammy nearly 5 with Spastic diaplegia from pre eclampsia and Beth 3 with slight right hemi from a stroke.

Hi all,

Good to hear from you Katie. I’m sorry that Curtis is having such problems with his hips. I don’t know anything about the stem cell therapy but would definately feel like you about trying everything first before resorting to surgery. We have been warned about the likelyhood of surgery for Edith later on. Our physio is also talking to us about botox to relieve the spasticity in her legs. Her consultant does not agree with this though. They quite often seem to have a difference of opinion which makes it hard to know what to go for.
We are booked in for 2 weeks at Bobath at the end of April but it all depends if we get funding from a charity in time. Our PCT won’t pay for it. I really hope it can happen.
As Edith gets older she is starting to show her frustrations quite strongly! She gets cross with me now when I’m trying to get her to use both hands or to practice her tummy time. Her language is coming on well though and she’s very good at telling me what she wants now. She counted her toes up to 10 the other day.
Ange, it is great to hear from someone with CP. The future seems such a big unknown and my head gets filled with scary thoughts about it sometimes. I worry about when Edith begins to realise the problems she will have to deal with. Did it happen slowly with your boys Anna and Katie? What have their contemporaries been like towards them?
Just going to get Edith up for our swimming class. Hope the pool is warm today!

Ruth, Mum of Adam, 4 and Edith, 20 months, who has spastic quad cerebral palsy and is going to achieve great things

Hello, sorry I havent bween intouch for a while. good to see you’ve still been communicating and its great to hear from adults. talking to curtis about ‘ what happens when he’s a grown up’ is pure guess work so I’ll check out the blog site you’re talking about. when we’ve had afternoon sessions at bobath some adults come in for treatment when we’re leaving and they are an inspiration to us. There was a program about stephen hawkins last year, I know its a different condition but I made curtis watch it and he still tells people he wants to be a scientist so I’m pleased he knows he can be if he wants to be.
we’ve had an up and down kind of time. he had hip xrays early jan and the botox didnt work on his hips! so we booked in surgery to cut the muscle in his groin. I really wasnt comfortable with this as I know surgery takes a long time to get over and he cant move around for weeks afterwards. So now we have a new plan. we do daily massage and more therapy, he comes home from school each lunchtime for stretches. We’ve managed to get a block a bobath – thankfully – and we are fundraising to have a go at a course of stem cell therapy followed by another block of bobath later in the year.
Curtis is still happy and playing and doing all the things he usually does. we just know that in the near future if we do nothing his hips will ‘go’ and he’ll face major surgery for the rest of his life. we may do all this and he’ll still face it but we’ll give it a go and keep it fun and at least then we’ll know we tried.
Experience in stem cell is minimal, is there anyone out there who can tell me anything about it? who has it worked or not worked for?
the aim is less spacticty in his legs and we know the progress may be slight but, after years of the best physiotherapy available, I think its worth a try.
what do you think?
all the best from katie

I am Mum of Curtis who is 6 and has Spastic Quad. He is fantastic. I am also Mum of Molly 17 who is also fantastic. I like gardening.

Hi Ange,

It is great to hear from someone who has CP, I wish your mums doctor could see you too, it sounds like it would be one in the eye for him.

I told my little lad about a blog site I found recently, you may have found us through it. He wants to dictate some posts to us, which we hope to do soon, so keep an eye out for him he is only 8 but I think would benefit from knowing there are people out there who live with CP go to university have jobs get married and have families, I don’t think he fully believes us sometimes.

Anna

Hi I am Ange, I was Born with CP 35 years ago.
My mums doctor told her to take me home as quote ‘I was a spastic, and there is nothing more we can do for her’ wish he could see me now.

I am left Hemi, with a little of everything thrown in, I can walk with a trolley, my left arm really feels nothing and my left leg does what it wants, it moves constantly.

I walked unaided till I was 15 then for some strange reason had a huge seisure which put paid to that. I have always had difficulty speaking, well not speaking, but being understood. I use a Toby Churchill communicator SL55 which lets me get my opinion across.

2 years ago I Started with Botox treatments and can honestly say this has helped massively, I also use Baclofen, Arthrotec, Clonazepan, and diclofenac. some of the drugs you may not have heard of but they are for joint pain.

My right hip is disintegrated now due to inflection (turning in of the knee) because I walk extra strain is put on the hip and over time it fell apart. I can still weight bear so not much changed, still use my trolley.

I got married in 2008, to my boyfriend of 7 years and am very much enjoying life due to the fact the my family and friends all let me do my own thing.

If anyone has any questions please don’t be afraid to ask.

Ange 😀

Hello, I am Ange, left hemi with a little of everything thrown in for good measure. I love life, and my Husband John, but hate people talking over my head as though I am not here.

Hello! I am yoing adult (female) with CP college educated who saw a need to share my expierence with others- I write in an annoyomus voice as i feel that what i am sharing is really a universal message of hope!
I have posted this elsewhere here but i wish to make it more visable thus i am posting it here!
http://lifeofthedifferentlyabled.wordpress.com/
thanks for your time
its updated daily!

hello i am an adult college graduate with CP and i have starting blogging about the joys and chalenges of it all I invite you to follow me over to my blog as i have created it for the parents and youth (where applicatable) to laugh cry and learn together
heres the link lifeofthedifferentlyabled.wordpress.com
thank you so much for your time

Hello all

and a happy new year to you all. Christmas break over and back to school, which is great fun driving in the snow! it was so beautiful over the holidays but now I think it is time for it to go, thank you very much.

Ruth, persevere with Ediths lycra suit, Harry was very difficult as well, I can still remember crying in another room when he shouted he hated mummy for putting it on him. It has worked and he is onto his fourth one now, and we do see the carryover effect on him.

Just getting kids ready for bed, will post more later.

Take care
Anna

Hi everyone
Hope you have all had happy Christmasses. We all came down with heavy colds but managed to have fun as well. One good outcome of the cold is that Edith has started sleeping brilliantly at night. I’m the one getting her up at the moment!
We got her lycra suit just before Christmas. She was fine for the first couple of days but then, when she got quite ill with her cold, she couldn’t tolerate it so I haven’t put it back on her yet. I feel we’ve all had a bit of a break from everything over the last few weeks but I need to get us back into the swing of it all again. I’ve also got to start her with an eye patch and in 2 weeks she will be fitted for leg splints. Time to stop putting things off…

Ruth, Mum of Adam, 4 and Edith, 20 months, who has spastic quad cerebral palsy and is going to achieve great things

Hi weve just done three days of bobath, I cut it down so curtis can do the dress rehersal today and then his school play tommorrow, some things even physio therapy has to give way for! I’m looking forward to seeing it!
The physio was really useful though, we were given a new approach, more centred on him initiating the movements, which is great because we’ve been doing the same things for years and though we’ve kept his muscle strength up, we’ve made no major milestones. Ruth – I am still looking forward to the day curtis can sit up on his own!! he can do it but he still throws himself backwards or just looses his balance.
Megan I really admire the commitment you have made to CE. our consultant said and I agree with him, that it doesnt matter which school of thought you get into. the outcome is focussing on each movement they make and facillitating it. We have built a room in our house with mats and benches and lots of toys so we’re able to play everyday, but doing it in a way that fits his physical needs.
I think it is tough that you dont get the support of Ots and Physios though. here in the uk most of them have had either CE or Bobath training alongside their physio training, somtimes they get fed up with you if you want to do everything differently but generally extra coaching is tollerated.
oh well I had best start christmas shopping now all the therapy is out of the way!!

I am Mum of Curtis who is 6 and has Spastic Quad. He is fantastic. I am also Mum of Molly 17 who is also fantastic. I like gardening.

Hi Katie, Megan and Anna,

Thank you all so much for taking the time to post your thoughts. There is always so much to think about and decisions to make and I think I tend to worry too much about missing out on something that might help Edith. I don’t want to fail her in any way, it’s a big responsibility isn’t it? I try to keep a balanced view and open mind. As we go on I guess I’ll gain confidence in my own decision making.
Edith is getting a lycra type body suit just before Christmas and is being fitted for splints as her feet seem to be turning in a little. She is much more effected in her legs than her arms. She has actually got very good control in her left hand and arm which is encouraging. She is such a chatter box now and has just learned to say “I lub oo” which is keeping us all smiling. I’m longing for her to be able to sit. When we try to practise she thinks it’s very funny to throw herself backwards!

Ruth, Mum of Adam, 4 and Edith, 20 months, who has spastic quad cerebral palsy and is going to achieve great things

Ruth,

I think that as parents you will try almost anything if you think there may be a chance it will help in some way. Conductive education is as far as I am aware an approach to daily life, rather than a formal set of physio exercises. We took Harry for a few months to a centre near us, It had been reccomended by a mum who thought it was wonderful.

We tried but I felt that there was not enough corrective tecniques, for instance when Harry goes to standing he tends to put his knees together to stable his base, we have been told by Bobath and his physio to make sure he keeps his knees apart, this makes him use more muscle and will help in later life. The girls at the CE centre were happy to let him keep his knees together, there were a number of other things that I felt were not quite right, so we stopped going.

However, I think that every child is different, and different things work for different kids, so if I was told there was something else out there I would go along have a look and as long as it causes no harm give it a go.

Take care
Anna

Hi guys,

Just a quick one as Lauren is sick and its full on here… I have a 2 year old as well so hoping he isn’t going to catch it!

I just wanted to talk about Conductive Education as Ruth you asked if anyone knows anything about it….

When Lauren was born we had a physio, OT, slt etc etc and once a month or so they would come and do thier thing and that was that. I didn’t feel like we were getting any real benefit and Lauren hated the sessions so it was hard work. Anyway just by chance my husband saw a news article about CE and we went along to have a look. Against all the advice of EVERYONE we started sessions when she was a year old and we are still there 3 years later and have actually moved cities to enable us to attend everyday.

The results we have seen are remarkable, I have no doubt at all that the reason Lauren is walking is due to CE. The approach is common sense and it is right for us. I will say though that it is very hard work and I could never have done it without support from all my family as she attends with one of us 8.45-1pm Mon-Fri.

In NZ if you choose CE you lose the right for funding to anything else, so we no longer have the physio and ot ect. Physio’s say they dont agree because the conductors arn’t trained physio’s and the results are not proven. The conductors are magicians as far as I’m concerned and I see the results with my own eyes with my daughter (I think its all to do with funding as usual) It was the right decison for Lauren and our family but its not right for everyone, I would say go along and see. You will eventually find something that sits right for you and your family.

Oh, and just quickly about the buggy… ask the conductors if you go along to the session they might have some ideas for you. Lauren spends a small amount of time in hers so I use a mountain buggy becuase it goes everywhere, into shops etc. I find the more I support her the more she uses the support and doesn’t use her muscles, its a fine balance but I find the less support I can get away with the better. Again this is not what an OT would say! I give her lots of support in a trip trap chair for eating, drawing etc just not in the buggy.

Well, that wasn’t so short after all! Lucky I have such a great husband who is dealing with the kids!

Hi, my name is Megan, I have a 4 year old daughter with cp. We live in New Zealand.

Hi Ruth, Its just a thought but have you contacted a local group for kids with disabilites? I know every local heath authority is different, so you might not be able to get the funding, but other parents in your area might know if theres anything you can try.
Certainly funding or no funding, get your OT to do assesments for a push chair. once you have an OT reccommendation that your child has a need for any type of chair. then funds can usually be found either via one of many charities like Rowntree, cerebra or whatever. Or write directly to the your PCT – Primary Care Trust. Parents can get all kinds of things funded for their kids just by writing letters and perserverance. but to start with you need a letter from an OT identifying the need and naming the equipment and a quote.
It is incredible that parents like us who have such huge care responsibilites every day and night also have to become highly motivated letter writers and negotiators just to get basic equipment like a supportive pushchair. but it does sometimes happen. it will get easier as your child gets older and becomes eligible for more things.
Curtis loves going to mainstream school, but you’re right I do have difficulties. in some ways we have really fallen on our feet. his carer is lovely and his class friendly. But i’m never sure they move him around enough and with his hip trouble that seemed to confirm it. I’ve had meetings with the OT and Physio to review his movement and they will put together a timetable so its easier to know how often he changes position etc, but they are very strict with health and safety and that really restricts any movement he can do. having to analyse his every move at school is unfair on everyone, but I’m hoping once its done things can settle down again.
Bobath is next week and your question about conductive education – try it, if it suits you and your child then go with it. There is a limit to how many therapists anyone can cope with advising you what to do, but many people have found it great so give it a go when and if you feel like it.

I am Mum of Curtis who is 6 and has Spastic Quad. He is fantastic. I am also Mum of Molly 17 who is also fantastic. I like gardening.

Hi Karen,
Hope you are o.k. As the others have said, it definately gets easier. Especially as your own childs character starts to shine through and it becomes easier to think of the child and not just the disability.
Hi Katie,
I hope all went well with your second trip to Bobath, you are working hard! Does Curtis really enjoy being in the mainstream school? Is it well adapted for his needs? It must be so hard handing him over to the teachers when you are used to being in control of all his handling.
Hi Anna,
I’ve been told that it is extremely unlikely that Edith will get funding for a pushchair as she is only 17 months. When she’s 2 she will get £500 but that’s not alot considering most pushchairs seem to be nearing £2000. I’m so unsure what to do now. My OT just seems a bit vague. I said we might wait for a few months and she just said o.k. Edith doesn’t spend long in the pushchair but she is so reclined in her one and ends up slumped down. I think I’ll feel much better if we just go ahead and get one.
Do any of you know much about conductive education? There is someone coming locally from a school in London to do some sessions which I think I’ll take Edith to. My physio doesn’t approve though as they are not trained physios.
Hope everyone is well and looking forward to Christmas

Ruth, Mum of Adam, 4 and Edith, 20 months, who has spastic quad cerebral palsy and is going to achieve great things

Hello Karen, and all

first my apologies for not getting to you sooner, H has been poorly with a chest infection over the past week or so and it has laid him quite low. I see that Katie and Megan have been in contact and given some very good words of support. It is very difficult when first told that your child is not going to be the one expected, but as said before at the end of the day when they sleep you look down at their face and you simply see your child. The child you love so much that it hurts. It is a kind of grieving process and it does take time, but speaking for myself I am a million miles from the complete wreck in the hospital when H was born, don’t get me wrong there are still days, or hours in days when I am her again, but the joy you feel at ‘little’ accomplishments, the first head lift, smile or recognition of your voice is fantastic. You will feel great sadness, but you will also feel great joy.

Hope all are well and getting ready for Christmas.

Anna

Hi there Karen, hope you are doing ok. first finding out is so tough, and the days are difficult to get through.It has been said before about it being a kind of grieving process for the child you thought you were going to have. But they are still your children and they will still giggle and be cheeky and lots of the other things that kids do. It will be very different – increadibly so, sometimes but, they’re still children shining through giving you love and teaching you so much. these twins of yours will probably help you find skills in yourself you never knew you had!.
Curtis has been off since last thursday, another nasty cold. only a few more days at school and then we’ve got another week at bobath next week. poor boy must be sick of my company, I sure could do with a bit of shopping time this side of christmas! At least I’ve been able to move him around loads whilst playing – making the most of his lovely botoxed legs!

I am Mum of Curtis who is 6 and has Spastic Quad. He is fantastic. I am also Mum of Molly 17 who is also fantastic. I like gardening.

Hi Karen,

So sorry to hear about your little boy. I have a 4 year old daughter with cp affecting all of her limbs… the outlook was bleak… she is now taking her first few wobbly steps 😉

I know it is easier said than done but really try to take one day at a time, or an hour if that makes it managable.

All children are different, if they have cp or not… no one can tell you the future and that is the hardest part. I found that when I stopped reading and looking for an answer I could cope better.

All I can tell you is that the feeling of being lost and scared does pass. Someone said to me after Lauren was diagnosed that I would eventually laugh again and enjoy life again which I thought was impossible at the time… Its still hard because its not perfect but we do have fun and you will see for yourself some amazing miracles.

Mxx

Hi, my name is Megan, I have a 4 year old daughter with cp. We live in New Zealand.

hi everyone im new on here im a mum of six 10 7 6 2 and identical twins now 8 months old corrected age 5 months they were 14 weeks premature.when they were born they both had bleeds on the brain and we were told they wasnt gonna make it .me and my husband were devastated .but they truly are little fighters and made it thru kai was more severely affected than his sibling twin ben .they had told us that kai was likely to end up with some sort of disabillity ,i put it to the back of my mind and just concentrated on my babys .then last week i felt as tho id been hit with a hammer the consultant peaditrician told us kai has cerebal palsy two types spastic and dystonic and it affects all four of his limbs .im still in limbo ive read so much the last couple of days on cerebal palsy but nothing is sinking in .just feel so lost .and scared .xx

Hi Katie,
Good to hear that Curtis is back to school. The Bobath is great, we found it very useful for Harry.

Harry said it was good there and he enjoyed it even if they made him work hard, and he got a jumper from there. (H is dictating this to me as he is off school poorly, yet another chest infection).

Ruth
I can not believe that they have said that because Edith is only 2 they do not provide a pushchair. The correct posture and position especially over a period of time, i.e an hour or so looking around the shops, is so important. It is so frustrating that due to the NHS agenda/budget things like this are still going on Ruth do not take no for an answer , scream and shout if you have to. I am sure quite a few of us have had similar battles over the years.

Hope all are well.

Anna

Hi Ruth, I dont know any brand names to reccommend, curtis’ is very good but huge, he got it when he was around two and can still use it now he’s six! its a kimba spring. but I was going to say if the OT isnt looking at them with you then its best to check for the best support at hips and laterals. obviously it depends on your needs but good support is important. I think of curtis’s as a big armchair i can strap him into and off we go.
Curtis went back to school on monday, he is enjoying seeing his friends again, I have been frantically rechecking seating, standing and all his care routine to try and sneak in as much movement as possible without disrupting his already busy schedule.
God it is so easy to get fobbed off and sent round the houses by people on the phone! I’m trying not to be ‘ that shouty woman who is demanding this and that’ but somtimes it is all tooo frustratring.
Bobath was useful. at first is was difficult for me to watch the therapists try to get him to do very basic things that I knew he used to be able to do before. but he made progress throughout the week and it helped me remember things, like making time for sensory stuff or giving him time to do things for himself.
apparently we have a two month window of opportunity to make the most of the extra movement and feeling that the botox has given him.

I am Mum of Curtis who is 6 and has Spastic Quad. He is fantastic. I am also Mum of Molly 17 who is also fantastic. I like gardening.

Hi everyone, just a quick message. I went to a buggy demo today. There were so many there and so expensive! We won’t get any funding from social services as Edith is under 2. So, we want to get one that will last for a few years. Just wondering if anyone had any buggy they could particularly recommend?
Take care

Ruth, Mum of Adam, 4 and Edith, 20 months, who has spastic quad cerebral palsy and is going to achieve great things

Hello everyone.

Haven’t posted for a while as have had a difficult few weeks but in a much better place now. Hello Joanne, I’ve felt just the same about knowing which therapies to go for and what will be the best for Edith. Although the NHS have been brilliant with both my children over the last few years, I don’t feel they give enough support for these kind of decisions. Obviously all of us will do anything if we think it will help our children but it can get confusing. I have started a series of exercises with Edith with someone who is trained in neurophysiological psycology…a mouthful! My physio doesn’t think it will make any difference but I know it won’t do any harm and other Mums have been pleased with the results. Also I asked Edith’s paediatrician about funding for Bobath and he thought it would be very unlikely that I would get any as there are no proven results to show that it makes any difference over an extended period of time. But, all they have to offer is a physio every 3 weeks and lots of equipment. I think it’s important to feel proactive and I get so many positive feelings when working with these often very highly trained therapists that I feel it can do nothing but good. Go with what your heart feels and with what your child enjoys. And enjoy the time it gives you with them. I’m about to start the long task of applying for funding from various charities.
Hi Katie, I hope all is well and that you have a great time at Bobath. Please let us know how you get on there.
Edith is amazing. She is such a happy girl and her speech is coming on in leaps and bounds. She is still a long way from being able to sit though which gets worrying as time goes on. Her favourite thing at the moment is rough and tumble play with us and her big brother, Adam.

Ruth, Mum of Adam, 4 and Edith, 20 months, who has spastic quad cerebral palsy and is going to achieve great things

Hi Katie,

How did things go with the Op? Hope Curtis is ok and you too.

Welcome Joanne. Your worry about how much is too little or too much with regards to Physio. is a very common one. When H was little we tried to do some each day, then school takes over ard the free time he has gets less and less. We want him to be a little boy and join in as many things as he can, but he still has to do formal exercises 4-5 times a week. However as parents you never really stop correcting posture, pushing knees out, reminding to tuck feet in etc etc.

Has your physio given you a set of exercises to do?

regards
Anna

Hello Joanne, Good to hear from you. Your little boy reminds me of a brilliant book I read called ‘Blue sky July’ by Nia Wyn. (penguin).
The child in the story was reg blind with Spastic Quad and his mum went through an incredible time finding ways to reach him and help him reach his potential. Please go and get yourself a copy and read it, you may soak it in tears ( I did too) but it really made me believe in myself and my endless journey to get the best for my son.
Doing therapies with your child, I have found is really helpful. wether you get through any milestone or not, you are moving them and helping them feel different things. at the very least they are more content and your more likely to get a bit more sleep! Sensory therapies might well be your best bet.
In the early days the place where I got my best links to advice was from cerebra 01267 244200. They have a good web site and a lending library and some good researchers who will come up with answers for you.
We got our botox for curtis on thursday. his legs still rub together, a bit less than before but apparently his hip is good for now. We start a week at bobath from monday so I’m hoping we’ll get some good exersices to do with him. I really dont know what to do about him going back to school, he has been part time for weeks and I’m reluctant to send him back full time because he doesnt get to move around there like he does at home and obviously his displaced hip is a result of this. But I do want him to go to school. it is a local mainstream village school. he loves the link with other children but health and safety requirements means he doesnt get to do the things he can at home. I’m not sure what the long term sollution is going to be.
all the best from katie

I am Mum of Curtis who is 6 and has Spastic Quad. He is fantastic. I am also Mum of Molly 17 who is also fantastic. I like gardening.

Hi everyone x
My names Joanne and i have a beautiful 16mth old boy named Joesph who has CP and is reg blind.
The issue i have at the moment is this…. although we have physio, ot, salt, vis team etc etc doing there bit…i don’t feel it’s enough! so have decided to take a look at other therapies….took him to Footsteps few weeks ago and they said that they couldn’t accept him as he’s not co-operative enough ( he can just about hold his head up, can’t sit unaided or do much else really )….anyway it got me thinking…am i pushing things a bit too quickly ?? he’s still only 16mths and physio and ot say he will get all he needs from NHS so why waste money on other therapies (all the physio does is stretch him for half hour every 3 weeks)…hmmm….what do you think/do ??
Also he is reg blind which hurts me more than the CP !…makes things so much more difficult and i’m sure he’d be able to do a lot more if he could see bless him….i just don’t know what to do with him at the moment he doesn’t seem to enjoy anything other than…we call it wiggles lol….where he sits on our laps and we move him from side to side (faster you go the more he enjoys it) and laying on his belly for a kick around but only in the evening!? oh and of course cuddles
Any advice appreciated
thanx for listening/reading! x

Hi,

We have just come across this brand new website and had a look, really enjoyed looking through it. It seems really friendly, informative and supportive.

It seems that most of the postings have been made by parents, so we hope that you don’t mind if a professional posting is being made here.

Would just like to introduce our charity to you in a nutshell but for more information please visit our website at http://www.meganbakerhouse.org.uk

Megan Baker House is a registered charity that was set up in 2001 by the parents of Megan Baker who had cerebral palsy. Megan Baker House promotes the welfare of disabled children and adults with motor disabilities.

We provide completely free services and work with children from 6 months up to adulthood. Hope we can help or give you some more information.

Kind regards,

Annamaria Berger and Chloe Hicks
Conductors

A charity in Herefordshire, providing free Conductive Education sessions for children with Cerebral Palsy and other conditions.

Hello evetyone, hope all are well, we have all been down with a flu bug, but on the road to recovery now.

I NEED TO ASK YOU ALL A BIG FAVOUR. THE SITE HAS UNFORTUNATELY BEEN GETTING A FEW SILLY PEOPLE REGISTERING WHO REALLY SHOULD BE USING THEIR TIME A LITTLE MORE CONSTRUCTIVELY. I HAVE DELETED A LOT OF THEM, BUT THERE ARE STILL A FEW THAT I AM NOT SURE ABOUT. IF YOU HAVE REGITERED AND HAVE NOT GIVEN YOUR NAME ONLY A USERNAME, COULD YOU PLEASE LOG IN AND EITHER GIVE YOUR FIRST NAME OR IN YOUR PROFILE PUT A SINGLE LINE SO THAT I KNOW THAT YOU ARE GENUINE.

I AM SO SORRY TO ASK THIS AS I AM SURE YOU HAVE SO MANY OTHER THINGS YOU COULD BE DOING.

Finally, welcome to Megan from New Zealand. Thank you for your inspiring words.

Regards to all
Anna

Hi, I’m Megan, my daughter has cp, we are from the UK but live in New Zealand. My story is similar to those of yours written on this site, lack of oxygen during birth and cp was the result. Lauren attends an amazing school called Conductive Education, she is 4.

I wanted to share this story I read a while ago.

Autism! Pdd nos! Aspergers syndrome! ADHD! High tone! Low tone! Delayed! Hearing these words about your child can be crushing. They can devastate you to your very core. The good news is THEY DON’T HAVE TO! Let me tell you why….

It doesn’t matter. That’s right. It simply doesn’t matter. If you want to really help your child then read on. I’m serious. Don’t be like the thousands who wish they had “lived” this concept sooner.

Pretend for a moment you have a newborn. He is simply perfect. By the time he is two years old, his fingers are so long, they look strange. You go to a renowned physician and ask “What’s wrong with my child? Why are his fingers so long?”. The physician smiles and says “Your child has a condition called spindle fingers. He has a natural gift for playing musical instruments. Many dream of having this talent”.

You’re absolutely thrilled and can’t wait to share the news. You rush home but on the way you stop to buy a toy xylophone, piano, drum set and flute. You set them out on the floor when you get home and you watch proudly as your toddler strums each one of them. You don’t care that everyone else thinks it just sounds like noise. You have a budding musician on your hands and he’s practicing!

As the months go by you encourage your child to play instruments. He gets a little older and expresses his preference for the piano. You take him to piano lessons, listen to famous piano players and perhaps even go to concerts. You explain to your son that his fingers are long because he is talented at playing the piano. Your son plays the piano beautifully. He is proud of his fingers and his talent. You are proud of your son.

You run into the physician a few years later. You tell him proudly about your child’s piano skills. He smiles broadly and says “I made it all up. There is no condition called spindle fingers”. “What?” you shriek “that’s impossible. My child is an excellent player”.

“Of course he is” says the physician “It’s called belief. You believed in your child’s fingers. You believed in his talent. You encouraged him. It didn’t matter how many mistakes he made. You hardly heard them because you knew he was on the path to greatness. Your son felt your belief. He saw it in your eyes. He felt it course through his being. It inspired him. Every time he looked at his long fingers he thought about his talent. He felt proud of himself. He knew he could do it. Your unwavering faith inspired him to be the best he can be”.

My advice to you is this. Forget about the boxes and the labels. Ignore the judgments. Your child is fascinating. Your child is a unique and wonderful being who is incredibly special. Give him the tools. Encourage him on his journey. Never lose faith in him. Stand by his side. Teach him as much as you can. Watch in delight as he soars far beyond everyone’s expectations. Everyone’s except yours and all those who joined your belief along the way!

Hi, my name is Megan, I have a 4 year old daughter with cp. We live in New Zealand.

Hello Katie and Curtis,

It has been a hectic week, we have had a lot of family birthdays this week, so everyone has been tired. Trick or Treating was good this year, both of mine were really into it this year and enjoyed it. I remember they have both, in the past, been a little scared of the whole thing.

Good luck with the 12th, I hope all goes well. Have they said how long Curtis will need to stay in?

Back to school in the morning, sor should I say this morning, having one of my can’t sleep nights. Sometimes I seem to have so many things going round my head I simply can not turn my mind off and so I wake up far too early.

Take care all.
Anna

Hi hope everyone is doing alright, we had a good weekend, we all went out trick or treating,( in his walker) curtis enjoyed it but at each house we got to he he was soo terrified he was frozen to the spot! he is really sensory defensive, jumping at the slightest thing. he has refused to watch any cartoons recently – incase a halloween episode comes on!. He was big and brave on saturday night and had a great time as a result.
We are still on the countdown to his op, ( nov 12th) we are in limbo, waiting to see what new things he might be able to do after it.
Now the halfterm hols are over I’ve just put together a huge list of everyone I need to phone to get updated equipment/exercies/posture management for the forthcomming weeks to try and make sure it doesnt happen again. I am so nervous about the hospital, he hasnt needed to go in for anything for years. I feel sick everytime i think of it. makes me realise how lucky we’ve been these past few years, some parents deal with this kind of thing all the time.
Hope you all survived half term without getting too frazzelled!
Katie

I am Mum of Curtis who is 6 and has Spastic Quad. He is fantastic. I am also Mum of Molly 17 who is also fantastic. I like gardening.

Hi Ruth,

Just a quickie on funding for Bobath, I started ranting about postcode health care and how it was supposed to be a thing of the past. That I knew of people in different parts of the County never mind the Country who had better access to things like the Bobath Centre. It might work for you.

It is great to hear that Edith is doing so well, especially with her speach.

I have no idea how you must be feeling at the moment about the pregnancy, but you will make the right decision, whatever you decide. It is a very difficult time for you and my thoughts are with you all.

Take care
Anna

Hi. I just thought I would introduce myself. I am Margaret and my son Wyatt, 3 1/2, has cp. Well, at least that is what we are calling it. CP is one of those diagnosis that they give you when they aren’t really sure what is going on. He has intention tremors, ataxia, low tone and cannot stand or walk independently. He uses a walker or crawls for mobility. Cognitively he is very smart.

Wyatt was born 5 weeks early due to preeclampsia. He did fine, breathed on his own, but they kept hiim in the nicu for a week anyway. He was lethargic when he came out, but thinking back on it, I think it was just the way he was. He was developing ok, though he took longer to reach some of the minor milestones…even smiling took longer. I have two older kids so I knew what I should expect.

As Waytt start sitting up, he had head titubulations. His head would nod and bob and weave all over the place. He pulled up at about 15 weeks but didn’t start cruising until close to 2. At about 2 he got a reverse Kaye walker. He had an MRI at 18 months which showed some abnormality, but nothing remarkable.

Wyatt was in early intervention from about 18 months, when we realized that there truly was an issue, until 3. At 3 he started in the ESE preschool program at our local elementary school. The PreK program is wonderful. He gets PT, OT and ST at his school, which is great because our insurance doesn’t cover it.

Wyatt is just now starting to stand alone without holding on for 30 seconds at a time. He can run so fast with his walker but tends to get his feet tied up together. He didn’t speak until nearly 2 and now talks non-stop, though he is still delayed.

I feel sad that he can’t do what the typical children can do. Then I feel sad because I think I am holding him back from doing more. He is getting heavy for me to carry and that makes me sad because I wonder how much longer do I need to carry him around. I don’t think I am doing everything I can do for him…but I just don’t know what to do or how to do it.

We have had other issues along the way, mostly mild, so I didn’t really expand on them. I am just hoping that there are parents in similar situations that I might be able to support and vice versa. Nice to meet you all!

Jacksonville, FL

Mom to Wyatt, 3 yo, mild cp, ataxia, tremors

Hi everyone,

Sorry I have not posted for a while. Katie, I hope the op goes/ has gone well. Thank you for your encouragement and everyones comments about the Bobath. I’m seeing our paediatrician on the 6th so will start my campaign for funding!
Edith has been so happy recently. Her speech is coming on in leaps and bounds, she picks up several words a day and is also managing to finger feed well. we’ve joined a group run by SCOPE called school for parents which is great and the people who run it are so positive.
We’ve had a bit of a bombshell too though as I’ve just found out I’m pregnant again. I just don’t know what to do. My first child was born at 25 weeks and had such a hard time at hospital but has done amazingly well since. Edith was born at 30 weeks. They don’t have a reason for me, I’ve always been very healthy through the pregnancies. We always said we wouldn’t have another child as the risk was too great. Also, Edith needs so much of my time right now. The thought of having another premature baby fills me with dread. I don’t expect anyone to advise me on this one, I know only I can make the choice…

Ruth, Mum of Adam, 4 and Edith, 20 months, who has spastic quad cerebral palsy and is going to achieve great things

hello everyone,

it has been a few days since anyone posted anyhting here so I thought I would give an up date on things with Harry. His new epilepsy meds seem to be working, and he has not had a reaction to it as he did the Epilim.

Harry also goes horse riding on a Saturday afternnon, the Riding for The Disabled school is quite close to us, and although it is not his favourite activity it does seem to be good for him.

His Lycra body splint is working ok as well and having the two piece set is better than the all in one we normally have. It is easier to get on and off, and we can get the bottom half down when the toilet is needed without removing all his clothes.

Hope to hear from you all soon.

Take care.
Anna

Memory like a sieve.

Forgot to say that I have some A4 posters telling people about the site. If anyone knows of a good place to put one up, I could email a copy to you if you are happy to print it out and get it put up. Just let me know either on this forum or by the contact link at the bottom of the page.

Thanks
Anna

Hi all,

Katie I must say I have not given Swine Flu jab a lot of consideration till now. It is one of those situations where you try to predict the possible future and can very easily get very confused about what to do for the best. I plan to have a conversation with Harrys consultant to discuus this. Harry coped with all his previous ‘baby’ jabs quite well, but that was before the epilepsy kicked in and he started on medication.

It can be quite scary even giving a cough medicine, you always have to check for any potential problems, and as every child is different I think we should speak to a few people in the know and do what we feel is best.

Hope your days are brighter for a while. We had a good day last week, Harry after 4 years of swimming lessons managed to ‘swim’ 5 meters, the people at the pool must of thought there was a crazy woman at the side of the pool, the amount of cheering I was doing, but for H it was like swimming the channel, and he has shown anyone who will look, his certificate and badge.

Take care all,
Anna

Thanks Anna, I’m sure it will be fine. we were hoping to get botox for his scissoring legs anyway. We got him some baby guinea pigs at the weekend and he loves them!
I do have another question though if anyone knows. The swine flu jabs are now available and kids with CP will be high up the list to get them quick. but i do have reservations about it. I’ve read that people with neurological conditions should’nt have jabs. he had all the others they are supposed to and he did get really ill. so ill that i didnt give him the final boosters. the doc said this would be fine, but he thinks I should give him the flu jab and I can see it would make sense, I just wondered what other parents were doing with their kids?
all the best from katie

I am Mum of Curtis who is 6 and has Spastic Quad. He is fantastic. I am also Mum of Molly 17 who is also fantastic. I like gardening.

Katie,

Hang in there, and be brave, bad days will come we know that, but we need to remember the good days, the bright and sunny days. Sorry about the pending op. for Curtis and all the stress and worry that will go with it for you and your family.

Not sure about the parking situation, surely there must be some sort of pass you can get, can the hospital not give you any help or advise?

Take care
Anna

Joey,

was wondering if your sister had taken her little girl back to the hospital yet and if she had what did they say?

Regards
Anna

Hello, Just to add to Anna that Cerebra funded curtis to go once a month for a year to bobath which was brilliant.
We had a bombshell yesterday. we went to see the consultant, he took xrays and his hip has come out of line. this is the first surgery he will need ( since he was 2) and although it has been one of the things he’s at risk of I’m really fed up that the day has come.
I moved him around and did so much playing and physio during the summer, he comes home from school three lunchtimes a week to have a stretch out etc. but he has had a huge growth spurt and the doc reckons this must be it. ( combined with all the manual handeling restrictions at school).
I have a question, We go to the Royal London in Whitechapel. we have only been there twice. There is NO PARKING. Yesterday we parked at sainsburys but stayed too long and got a parking ticket ( joy). Does anyone know how we’ll be able to get him into london with the car, park close by, leave it all day and get our car back without it being clamped? I cannot imagine that having an anastetic will leave him ready to use buses and trains. does anyone manage to use this hospital?

I am Mum of Curtis who is 6 and has Spastic Quad. He is fantastic. I am also Mum of Molly 17 who is also fantastic. I like gardening.

Hi everyone,

It is fabulous to see you ‘talking’ to each other, if anyone has any ideas on how to improve the site please let me know.

Harry has been to the Bobath a few time, it was great and really helped to focus on certain areas and we believe really helped him a lot. Funding is always a difficult one, but I was recently sent some information on a charity that will fund Therapy. It is the Caudwell Children and can be found at http://www.caudwellchildren.com

Applications can be made for children under the age of 18 years and who live in the UK

Finally to all those who have registered but not yet written on the forum, I hope to hear from you soon.

Take care
Anna

Hi Ruth

We have Josh who is 4 now and we have just had our 4th visit to the Bobath – we go every 6 months for 2 weeks intensive therapy. It is such a fantastic place and I really dont know where we would be now if we had not gone. I totally agree with you that the pre-school years are so very important and we do carry out an intensive physio progamme with Josh on a daily basis. There will come a time, very soon that he will be become too big to handle for all this therapy, so this is why I think these are important years. He has come such a long way. When we started at the Bobath Josh could not do anything, but now he can sit and stand with help and has learnt to roll around, to such an extent that I found him in the dog basket the other day – the other side of the house to where I left him! The Bobath also give excellent advice on equipment that not even the best local team can provide. And very importantly they give excellent speech and language therapy. Very important for us as Josh is also profoundly deaf and at our last session last month, Josh signed his first word, more. Clearly and deliberaterly and he has carried on signing it. Such a breakthrough.

I also appreciate the view that you have to have days where the child is allowed to just be a child. This is very important. The Bobath teach you deliver the physio so that the child can play and do things that they would not be able to do if not helped.

I know some PCTs dont fund the Bobath, we are very fortunate to have a PCT that has. As with everything it has been a fight, but worth it. I think every child should have the opportunity to go there.

I am mum to 4 year old twins. One of them, Josh has severve cerebral palsy, is profoundly deaf (with cochlear implant) and has chronic lung disease and a gastrostomy. But – the best smile in the world!

Hi Ruth, the wheelchair was such a big barrier for me, we did so, so much therapy, everyones else’s kids with CP just seemed to ‘get it’ and we watched them all get up and walk. curtis never did. so the wheelchair has been looming for years. the OT offered us one when he was 2 and I was so blown away by how she could give up so easily etc. But in hindsight she probably could see it coming. Now he has one its ok. sure I wish he didnt have to have one and now we have to spend time learning to use it – which is more blasted therapy time! But I know I have really tried everything I could. And to be honest he uses his walker just as much as the chair.
I always thought that accepting a wheelchair into our lives would be kind of giving up, but really it isnt. He walks with a zimmerframe and me supporting him everyday. we still have lots of goals , lots of things he is getting better at. The Bobath therapist we used to have ( now retired) used to tell me to do the therapy with him kind of just for the sake of doing it – not for the goal – which is a good job because we never got the goal!! But non moving kids still need to move around and stretch and roll and squat etc etc. If we dont move him – he doesnt move, so we move him lots and lots.

I am Mum of Curtis who is 6 and has Spastic Quad. He is fantastic. I am also Mum of Molly 17 who is also fantastic. I like gardening.

Hi Katie,

I really think I’m going to go for the Bobath. Like you said, it’s so important to find ways to do the therapy whilst enjoying play.
I had a really difficult day today. We went to our swimming class and Edith got so upset which seemed to carry on through the day. She goes so rigid when she’s upset and becomes really difficult to handle. I read something that upset me as well. Edith has spastic quad and I read how it is likely for children who are affected in all four limbs to end up in a wheel chair. I know in my mind that this is a possibility but found it hard to read in print. It’s the days when you feel tired and lacking in energy that it seems such a mountain to climb and the future suddenly seems so scary. Anyway, tomorrow is another day…..

Ruth, Mum of Adam, 4 and Edith, 20 months, who has spastic quad cerebral palsy and is going to achieve great things

Glad to find this forum
we have a son with cerbral palsy damged at birth by being deprived of oxygen the hospital took 11 yrs to admit responsibility
He is 14 now very disabled but a complete joy!

Hello, Just found this forum, first one I’ve joined. I guesse I’ll start with a bit about Curtis, who was 12 weeks prem. he didnt have a bleed so wasnt diagnosed untill 18months ( I dont know why – it was fairly obvious somthing major was up!). The whole process of apointments and therapies and getting used to how I feel about CP. How funny Curtis is combined with how I would gladly chop off one of my limbs if I could only help him do more. This does make you feel pretty alone sometimes.
Now he is six, he is in a wheelchair sometimes – just progressed from an electric to a manual push. He spends a lot of time in his walker – a bronco from R82 – very good. He got a new bigkeys keyboard for his birthday last week – writing is going to be a big challenge, but he can read a bit.
There was a question about the Bobath centre and a comment about time and therapies. It is a huge issue for us mums, for each bit of physio we do theres always a bit of speak and language we should be getting on with etc – and now homework! Curtis started at the Bobath centre at 2 yrs. He has had 2 x two week blocks and we went once a month for 3 years. Although this was a lot of time in the car, I found it helped a lot because it gave us ways of playing – so we were doing the therapy without even noticing. we stopped for a year when he started school ( ran out of money too!) just started again. you can apply to various charities for funding.

I am Mum of Curtis who is 6 and has Spastic Quad. He is fantastic. I am also Mum of Molly 17 who is also fantastic. I like gardening.

Hi Ruth,
It is very difficult trying to judge how much physio is enough for the day and when to simply enjoy being a mum. In the beginning you try to do everything at every oppurtunity you can, eventually I found that it was best to get Harry mid morning, give him chance to wake up and spend time together, then do what we had to do, and then do something special in the afternoon, finally putting a little bit more in after bath and before bedtime. If the day was going to be our day I did not mind missing some of the physio, as we still needed to be mum and son and have fun together, he still needed the chance to be a little boy. He was still corrected in his posture and movement throughot the day anyway, and we tried to bring as many of his exercises into play as we possibly could.

We have done pyhsio since H was a few days old
Harry is nearly 8 now, and he still has his formal physio plan, and he does complain about it from time to time, but we do get on with it as best we can. You will know yourself what is right for you and your family.

Hi, my name’s Ruth.
I have a son, Adam, who is 4 and a daughter, Edith who is 15months. Both were born prematurely. Adam was diagnosed with mild cp but you can’t really tell and he’s just started school and doing so well. Edith however has much more severe spastic quad CP. She had a bad bleed in her brain just before she was born and it’s been much different to our experience with Adam even though Adam was only 25 weeks and Edith made it to 30 weeks.
We have been treated very well by the NHS so far and have some great physios and OTs. I’ve recently been feeling very strongly the need to be doing more though. I feel the pressure of time, feeling that the more we can do while she’s young, the more chance she will have of being able to sit or walk. I wondered what research others may have done? I’ve been looking at the Bobath centre as my physio has trained there and it seems to strike a chord with how I feel. We go to several groups and do a special swimming session. Our weeks already seem so full, especially as I have to work part time. I feel the need to find a balance between ‘treating’ the CP and just enjoying our beautiful little girl.

Ruth, Mum of Adam, 4 and Edith, 20 months, who has spastic quad cerebral palsy and is going to achieve great things

Hi Mags,

great to hear from you again. Hope Zak is behaving himself, boys can be full of trouble at times. Harry had ‘splints’ by this I mean the plastic moulded things that go up the leg and round the foot, he got them when he was starting to rise up on his toes and his feet were starting to roll in so that the arch of his foot was on the floor and his ankle was getting down there too. He had ones with motor cars on and then footballers. If this is the sort Zak is going to get, I don’t think they hurt ‘H’ but he did complain when he first got them and his teddy actually wore them for about a week, before we could even get them on him, after that it was a matter of building up his tolerance to them. I do think they worked, although he does still roll his feet in, but now has insoles instead of the full splint, to sort that out. The only thing is that you need to get new shoes to keep them in place as they make shoe sizes bigger. They are held on with velcro and are worn over the sock, so whilst you are trying to get the little fella up on his feet they may be slippy unless he has shoes on.

As for you not being sure about Zaks ability to walk yet, maybe he will get there, maybe he won’t, but at I look at it that we need to give pretty much everything a go, just in case, and as long as it is doing no harm, We consider all sorts of things.

How is everything else? How are you feeling? When Harry was young I always found physio appointment the most tiring for both of us, and especially when ‘H’ was in a mood.

Take care and hugs to Zak.

Anna

Hi everyone. Lovely to read some new stories and ‘meet’ some new people.
Zak had physio today, and we have come to the conclusion that his feet need splinting. His feet have been misbehaving for a while now, but they seem to be getting more noticably mishaped just in the last couple of months. He already has Piedro boots, which are great for in his standing frame, but they don’t support him quite enough.
He can’t walk at all, and the chances of him ever walking are extremely slim (though we haven’t given up just yet). He can’t really weight bare either because although he has very strong spasms in his muscles, underneath that spasm his muscles are very weak. So because he isn’t using his feet in the normal ish ways they have started to turn out. When he is lying on the floor his feet turn out so much his toes touch the floor. Also his ankles are twisting so he can’t put his feet flat on the floor. One leg is shorter than the other due to pelvic tilt, and the tops of his feet are very rounded forcing his toes to point to the floor.
I thought hard about what the PT was saying, and decided she was right. My first thought was that if he isn’t walking would it really bother him if his feet were a funny shape. But then of course he still needs to get them in to shoes, and like I said before we haven’t given up on the weight baring and even walking.
Does anyone have any experience of splints with their children? Do they bother them or hurt them?? Can you get nice boys ones? Zak likes pirates!
And more importantly, do they actually work???

I am Mags. Mum to Ashleigh (10) and Zak (2and a half). After getting stuck during delivery Zak has severe CP, which has left him registered blind, gastrostomy fed, no speech, can’t walk or hold his head up and suffers fromLGS which is severe, uncontrollable epilepsy. My kids are my everything.

Hello again everyone,

and a big welcome to Bandi. Thanks to all who have taken the time to write on this site, the main thing that everyone seems to be in agreement with is that it is great to have a place where you can ‘talk’ to people who have gone through, are going through and will go through what we have. All our children are different, they all have different needs, yet one thing that joins us all is the need to know that somewhere someone else really does know a little about what I am feeling today, be it a good or a bad day, they may not have the answers, but they may have a suggestion to help us get through the current challenge we face.

Keep writing, and please let anyone else you think may benefit from chatting with us know about the site

Take care
Anna

Reading everyone’s posts has made me feel as if I have finally found a place where others get it. I have boy /girl twins who are 6 1/2. My son was dx with mild CP at the age of 3 after many doctors appointments and me asking numerous doctors if he has CP? The answer was never clear to anyone, some would say yes while others woudl say no. Finally, after seeing a doctor at Kenndy Krieger Institute in Maryland, we were told he does indeed have CP. The twins were born at 34 weeks. My daughter had/has no issues. She is a wonderful person in the 1st grade. My son is also wonderful, he has a very old soul and a wonderful personality along with a smile that can lite up your day. He is in a self contained special education class in K. Deciding to have him repeat K, was something we struggled with. I know this decision will be one of many that have come and gone as well as those that will continue to come that we struggle with. I work full-time along with doing all the other things which come along with having a family. I am looking forward to getting to know each and everyone of you so we can be a wonderful support to each other…finally a place where others get it.

Joey,

Hello, so sorry to hear about your little niece. Early signs is a difficult one, all children with CP are different, this is the worst bit, it is simply a waiting game to see how she develops as she grows older. I feel that doctors tell you very little for fear of either scaring the pants off you or giving you false hope.

Our little chap was diagnosed very early too. He was very ‘floppy’ could not hold his head up, and later had trouble sitting up, crawling, walking etc.

It is unfortunately a matter of taking each day as it comes, get involved with physio therapists as soon as possible, and most importantly enjoy this new bundle of love that has been sent your way. As with any child the amount of tears, worry and sleepless nights fade with the amount of love you can feel from one small grip of a finger, one simple eye movement or a first ‘smile’.

Let us know how things are going, A few of us are further down the line and may be able to offer some help and support.

Thanks for getting in touch with us.

Anna

hi. i thought i would drop a line seems i have registered. My neice who is nearly 1 month old was diagnosed with cp after having fits and spending the first few weeks of her life in intensive care. she is home now and hasnt had a fit for a few weeks. the resukts from her mri said that she had brain damage to her right side and that would affect her left. she grips fine and u would never know what shes been through already. the docs still havnt bothered to give a full report from the scan. my sister has an apt next month at bristol hosp and im hoping they will be able to tell her more. its been so scarey and the not knowing is the worst. im in admiration of those who look after disabled children and the love that must fill their hearts when they achieve something brilliant. really i would like to know if any1 else faced this and what r the earlier signs? xx

my neice has been diagnosed with cerbral palsy. she was born on the 1st sept 09

Hi everyone,

Sorry I have not been on for a couple of days. Hello to all new users, if you have registered and not yet written anything on the forum there are are lot of us out here, simply taking it hour by hour day by day, getting by as best we can.

A few comments seem to be following the same pattern, about frustration with diagnosis, lack of undertanding from the experts etc.

We have found that a lot of medical work appears to be guess work, and so we second guess everything we are told, go away check things out for ourselves and then make decisions, this in itself can be exhausting.

Our little chap had seizures when he was first born, but then nothing till February 2008 when he had a very big one and ended up in hospital. He was put on medication, taken off medication and then nothing untill June this year when we had another big one, followed by little ones, back on the medication. He had a rare reaction so we have had to change meds, so far so good. We do however spend every minute waiting for the next big one to come along.

Anna

I often wonder what the statistics are on this one. Zak was diagnosed with CP soon after he was born, and was having siezures within his first our of life. He didn’t respond to phenobarbitol so they gave him clonazepam aswell, which basically knocked him out for 3 weeks. He came home siezure free, but they soon came back. At 8 months he was diagnosed with west syndrome which has developed in to Lennox gastaut syndrome. This is uncontrollable, frequent, daily and multiple types of seizure. He has a variety of fits, myoclonic, absence, tonic, tonic-clonic, gelastic and a copuple of other questionable things that we haven’t classified as yet. Because of the constant siezures his development is shocking. He is at a 3 to 6 month level for most things (though he is 2 and a half). It seems that every time he makes the tiniest of milestones, the siezures come and whip them away.
The medication is sometimes nearly as bad as the epilepsy. We have had many ups and downs, and it is still uncontrolled. Many people, even the ‘experts’ don’t understand what LGS means for our kids. We constantly hear “when his epilepsy gets better…..” do they not read his notes? or do any research?? it baffles me at times. Mostly it just scares me. Thanks for listening to be babble on xx Mags xx

I am Mags. Mum to Ashleigh (10) and Zak (2and a half). After getting stuck during delivery Zak has severe CP, which has left him registered blind, gastrostomy fed, no speech, can’t walk or hold his head up and suffers fromLGS which is severe, uncontrollable epilepsy. My kids are my everything.

Hi everyone. Found this group thanks to link on my friend Mags facebook page:) This is so great that this forum is here I can’t wait to talk to everyone and get to know you all. My name is Christine and I have a 2 and a half year old son named Dillon and he was diagnosed with severe Spastic Quadriplegia CP, Epilepsy, West Syndrome, Sandifer Syndrome, severe intellectual and developmental delay, cortical visual impairement, acid reflux, hypoxic ischemic encephalopathy, Insomnia disorder, respiratory issues and the list goes on..
I spend of my days caring for him and I’m doing it alone. Back in Febuary 2009 my husband, Dillon’s father decided he didn’t wanna do it anymore, he excused himself as he couldn’t handle a child like Dillon, couldn’t handle this family life and the responsibilities that come with a marriage and taking care of children especially a special needs child and so he walked out, left me and Dillon behind and long story short.. believe me very long, but I never seen him again (but I will someday I’m sure). I’ve moved home to where all of my family is since then so I can have the supports that I do have around me. So now I do what I do and live each and every day for my son Dillon.. he’s what’s most important to me in the entire world, and he continues his fight everyday.. he amazes me and he is my hero.
I’m really looking forward to making some great friends here and getting to know you all and sharing our stories… Christine

My name is Christine and I’m 26 years old and I’m the mother of a 2 and a half year old beautiful boy named Dillon. Dillon had a traumatic birth which resulted in a rare seizure disorder named West Syndrome and Spastic Quadriplegia Cerebral Palsy. I spend most of my days caring for him and I’m doing it alone. Back in Febuary 2009 my husband, Dillon’s father decided he didn’t wanna do it anymore, he excused himself as he couldn’t handle a child like Dillon, couldn’t handle this family life and the responsibilities that come with a marriage and taking care of children especially a special needs child and so he walked out, left me and Dillon behind and long story short.. believe me very long, but I never seen him again (but I will someday I’m sure). I’ve moved home to where all of my family is since then so I can have the supports that I do have around me. So now I do what I do and live each and every day for my son Dillon.. he’s what’s most important to me in the entire world, and he continues his fight everyday.. he amazes me and he is my hero.

Mags

Hello, welcome. This is the place to talk. Hopefully more and more people will get to hear about us and start ‘chatting’ Your poem is beautiful, it must have taken many tears to get that down on paper.

Zach is a very lucky little boy, to have such a clever mummy, who not only knows how to write but I believe knows exactly what he feels and needs, you are his mum. My own mum used to say she would often wake just before her new baby would cry in the night, it is a gift built into all mums, and is finely tuned when it is needed.

I have many questions to ask you about Zach, but will let you lead the way, talk about what you like. It can be a lonely place even when surrounded by the people who love you the most.

Take care
Anna

Mags’s poem can be found on the Articles page as a comment to the article ‘In The Beginning’

Hi everyone. Found this group thanks to link on one of the groups on facebook. A great idea, and I can’t wait to get to know you all.
My son Zak is two and a half. He’s such a sweetheart, with blue eyes that will melt the coldest of hearts.
He got stuck during delivery and and for 9 minutes they struggled to bring him back to us. Once he was ventillated he started fitting, and has never really stopped since.
It took him 4 weeks to cry, and he’s still pretty rubbish at it. We stayed in hospital for just over 4 weeks, and on the day we went home they broke the news. He had HIE II, and how this would affect him was anyones guess.
It became clear quite quickly that things weren’t right. By 2/3 months he still had never smiled, tracked or followed with his eyes, he made cycling movements with his arms and legs and his hands were permanently fisted.
Over the following months he was diagnosed with severe spastic quad CP, Epilepsy, West syndrome, GORD, severe developmental delay, registered blind, gastrostomy fed, micrcephally, sandifers syndrome, PMLD, Lennox gastaut syndrome and incurable cuteness.
He has recently started attending a special needs school nursery, which he seems to like, though it is impossible to tell…he has never learned to smile, can’t communicate (except for telepathically) and is really unaware of his surroundings….but he doesn’t cry and is tired when he gets home, so I assume he likes it.
I will fill you all in a bit more as time goes on….don’t want to bore you too soon.
Thanks for this group. It is so important for me to talk about things. It’s the only way I can keep my head above water. xxx Mags xxx

I am Mags. Mum to Ashleigh (10) and Zak (2and a half). After getting stuck during delivery Zak has severe CP, which has left him registered blind, gastrostomy fed, no speech, can’t walk or hold his head up and suffers fromLGS which is severe, uncontrollable epilepsy. My kids are my everything.

Hi Anna,

I have Mild/moderate spastic quadraplegia CP. All four of my limbs are affected. (legs more then arms) I cannot walk without assistance but, in spite of that I am very indipendant. My coordination isn’t the best at times. It seems to depend on the day for me but I take things one day at a time. Your website was posted on a facebook group about CP which I am involved in. As far as what I do know, I am a volunteer at a long term care facility. I did enjoy school very much. I graduated in 2005 with a full Ontario Secondary school diploma. I am really enjoying volunteering where I do. I work with some really great people.
I am almost 23 years old. I will be 23 this Thursday.
Take care,
Sabrina

I was born with Cerebral palsy.
My hobbies include singing, listening to music and playing on the internet.

Sabrina,

Hello and welcome. Wow Canada, I did not expect that. We have just set up this site, so thank you for contacting us and writing on the forum. I am sure that once things get going people will have lost of questions. For me I would love to know a little about your CP, how does it affect you. My little boy has low muscle tone, so he falls over alot and find it difficult to do some things, his cor ordination is gettings better, but it is hard for him to write and balance etc.

How old are you? Did you enjoy school? What do you do now?

Take care and I look forward to hearing from you.

Anna

p.s. How did you find out about the site?

Hi,

My name is Sabrina Howarth. I am from Ontario Canada and I was born with CP.
If anyone has any questions please don’t hesitate to ask.
Take care,
Sabrina

I was born with Cerebral palsy.
My hobbies include singing, listening to music and playing on the internet.

Donna,
Hi,
Oh yes, been there, with doctors who tell you very little. We have come to realise that there is probably little they can tell you. Yes no 2 children are the same, and it is unfortunately a waiting game. We were told to imagine a ruler 1 – 100, 1 is very mild with 100 way at the other end of the scale, your child will be some where in on that ruler. Great but where? We found that while trying not to give false hope to parents, doctors probably end up giving no hope, if that makes sense. We had very ‘black days’ where our imagination took over, so we decided that we would do everything we could to make sure that ‘H’ made it as far down that ruler as he could.

We insisted on speaking to a physio when he was days old, we knew there were going to be problems, what could we do now to help him. They probably thought we were mad, but gave us a little list of excercise we did at each nappy change, and for his clenched fists, we would hold his hand on our palm and lightly press with our thumb from his knuckles down towards his wrist. He still sometimes put his hand into a relaxed fist, but normally when he is trying to hit his sister! I have no way of knowing what will help your girls, only that if you can get your consultant at the hospital to refer you through to physio, occupational therapy, and we even got into Speech and language quite early (round about when he was due to start eating), it can only do good. They should be able to point you in the right direction.

Anna

Hi my name is Donna and i am a mum to 5 children 10,8,5,3,and 22 months.
Emilie and Evie have both been diagnosed with CP both within 24 hrs! We only found out in July so its all still pretty new to me and my partner.

Emilie has a mild form of diplegia she is unable to pedal a bike she is very weary on steps stairs etc. She also has difficulty dressing herself.Emilie was 7 weeks prem and was breathing by herself when she was born.

Evie-Lou on the other hand well where do i start? The hospital just kept putting her developmental delay down to her being 10 weeks prem.Well in July i was having none of it surely she would of been sitting up by now!
So they examined Evie and then told me that she had cp and was basically marched out of the hospital with NO information on CP at all i was just told that not to look into it to much on the internet as there were many types and no 2 children with CP are the same. I had heard of CP but didnt know to much about it. So we are awaiting our appointment with a different doctor who can then diagnose Evie further.
She is a bright baby always smiling its just her moblility side that lets her down. She is unable to sit,crawl and walk and sometimes has her fists clenched tight.

I’m desperate to hear off other parents in a similar position.
Well done Anna for this site here’s hoping it will pick up!

Donna

I am a mum to 5 children, the youngest two have just been diagnosed with Cerebral Palsy. Emilie is 3 years old was 7 weeks prem and just diagnosed with a mild form of diplegia. Evie-Lou who will be 2 in nov was 10 weeks early and she is still unable to sit unaided,crawl, walk.

hello all you new people who have registered with us. A big welcome to all. It would be great if you could write a little here on the forum. It could be simply just to let us know a little about yourself, or what sort of day you have had (good or bad). Hope to hear from you soon. ANNA

Wishing you all the best of luck with the site Anna. Harry is such a lucky little boy in that he has had parents willing to research, fight, discover, understand and push to bring advantage to every disadvantage his CP has left him with. I know how hard it has been and yet it has reaped rewards: Harry is a happy, cheeky and charming young man who resonates confidence.

I know from standing on the sidelines for seven years that this is not an easy subject to understand, discuss or open up to.

So, I hope CP talk (more a mission statement than a website title) can encourage others to open their hearts, understand, support and feel supported. Can bring some element of comfort to those who feel alone – and can bring benefits and advantage to those children and their families who live every day, every hour, every minute with cerebal palsy.

Congratulations on the site Anna – It looks great and hopefully will take off in a big way. I genuinely think this is a fantastic forum for people to get together and share thoughts, feelings and experiences with each other surrounding this (often difficult) topic. In addition to the forum – I think that the links to Articles etc. is a great way for people to further educate themselves around cp – iF i can help in any way (links to journals etc) let me know – and well done again x joe x

Hello and welcome to the CPTalk forum. We want to be a useful place for anyone. Remember to register and login to post a reply or start your own topic for discussion.
Thank you for visiting.

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