Thursday, December 22, 2011

I hate Epilepsy!

Bella really did well in her last few weeks at her new school CARE. I was disappointed to have to stop for the Christmas holidays but at least we got a good 6 weeks in at CARE before the holidays. Hopefully she can take up exactly where she left off on 1 December – her Dads birthday. And what a birthday present she gave her Dad. At school she had the speech and occupational therapist working with her at the same time. They had her on a swing which she loves. Movement is very motivating for her. They we were swinging her and then stopping and prompting her by saying “Ready…. Steady…..” and waiting for her to verbalise for “…go..” to get the swing moving again. And she did it, repeatedly.. She didn’t say a perfect “go” but she used the “g” sound at the appropriate time. This is huge that she used sounds purposefully to get what she wanted. I hope this means that the gate to talking might be opening even with just a little crack. Because once it starts opening hopefully the gates will eventually open WIDE!!!!


In seizure news… Hmmm. As I mentioned previously we started weaning Tegretol last year and the EEG we did in May showed epileptic activity, although she hadn’t had a clinical seizure. So we increased Keppra and a follow up EEG showed some improvement. We increased Keppra again and the next EEG didn’t show any more improvement. So we then increased Tegretol again and changed from the liquid to the controlled release tablets. She seemed so much better so I really expected the follow up EEG to show improvement but alas still no more improvement. The EEG still showed activity although much better than the EEG in May. So her Neurologist said we should leave it as we shouldn’t treat the EEG and only react if she is having clinical seizures. For quite a long time I’ve noticed that she often stares into space and we have never known if this is a seizure or not. I was told by another Neurologist that when this happens to blow in her face and if she reacts then it’s not a seizure. I’ve done this and she does react. But I still wonder if it’s just so quick that if by the time I blow in her face its already over. Anyway after more discussions with her Neurologist we have decided to take her to Cape Town early next year to a well respected Epilepsy lab there to do a 24 hour Ambulatory EEG to see if we can get a staring spell on EEG while she is awake. All her previous EEG’s have been while she is asleep under sedation. Then we can make some better informed decisions. I HATE EPILEPSY!!!!

1 comment:

  1. Me too! Sending you hugs from Sydney and hope next years tests gives you some more answers.

    Hope you have a nice Christmas x

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