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Topic: Diagnosis for CP

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?

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).

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

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