Archive for March, 2011

‘Hello Epilepsy’

Tuesday, March 1st, 2011

When Harry was first born the consultant at the time said that he was having frequent seizures.  To our untrained eye, we could not understand this as apart from all the machines and tubes attached to him and that he was in an incubator in a neonatal unit Harry appeared fine.  However the sign were small ones, eye movements, coordinated movements were not what you see in a new born baby.

Harry was started on daily doses of phenobarbatone, a medication used in the treatment of Epilepsy.After we left hospital, Harry continued to be given his medication for several weeks until at a routine neonatal appointment it was decided that as he had shown no more signs of any seizures we would wean him off the phenobarbatone and see how we got on.  We continued to be asked at each appointment any signs of seizures? No was our reply.

February 1st 2008, we woke to a winter wonderland, it was snowing.  The children were doubly exited now as we were due to travel to Centre Parcs in Cumbria with Nan and Granddad for a long weekend.  Our normal route across the country would have been by the A66, but we were advised on route that it had been closed, due to snow.  What should we do? It was decided to go the long way round, so what would have been a journey of a couple of hours took considerably longer.  Eventually we arrived safe and sound at our destination with two very exited children, checked into our lodge and eventually sat down to dinner.

The children were in bed and we were chatting downstairs and just getting ready to turn in ourselves, when we heard Harry coughing? NO! shouted David as he took the stairs two, three at a time, ‘he’s choking’!

Harry was making the most awful sound as we entered the bedroom, he was choking, David grabbed him and tried to wake him up, he continued to make the awful gurgling noise, then we spotted the strange movements his face, his arms his legs were all ‘flicking’ at the same time, ‘He’s having a fit’ quick phone an ambulance. 

Ambulance is on it’s way, but due to the snow it will take a while.  Charlotte who was sharing a room with her brother was taken by Nan to another bedroom, I was upstairs with Harry, David was downstairs talking to the emergency services who kept us on the line and asked us questions to pass onto the ambulance.  It’s ok lay him down, try to keep him on his side, is he still moving? Is he still breathing? WHAT?

The ambulance is going to take a while, but this had been going on for ages, the eyes rolling about his head, does he know what’s happening? Can he feel this? Is he too very afraid? 

The ambulance is nearly there, tell them his legs have stopped, his arms are stopping, I thinks it’s stopping. His lips are blue, He stops breathing, I scream this information at David, who passes it on.  What do I do? Flip him onto his back, pinch his nose and take a breathe, cover his mouth with mine and blow, again, again, Come on Harry, David is telling me the ambulance is in the park its minutes away, Harry gasps his own breath, and another one, his lips are going pink again, lay him on his side. Ambulance is here.

We are taken to Carlisle hospital where he was given oxygen, had bloods taken to check for an infection and we spent the night with a little boy seemed to sleep peacefully.  The next morning he woke, we asked him if he knew where he was. ‘Center Parcs’, no we said Hospital. He had no recollection of the previous nights adventure.

And so began our introduction to Epilepsy.  It was only an overnight stay in hospital, and was followed up by visits to his own consultant, medication, EEG’s and many sleepless nights.  From that night on and for many, many nights after David and I took it in turns to sleep in the same room as Harry, nights out ‘together’ were put on hold, one of us had to be with him, that was how we felt. We still to this day continue to have a monitor in his bedroom, and wake to the slightest noise.  We have had other visits to the hospital, for his big seizures and keep a log of any small ones; he continues to take his medication twice a day.

Epilepsy is a tendency to have seizures caused by a sudden burst of electrical activity in the brain, causing a temporary disruption.  For more information you could visit