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Valproate for Epilepsy with ASD: Any advice/experience?

(10 Posts)
TooOrangeyForCrows Fri 07-Mar-14 13:10:33

Hi
My DS is 8 and has a dx of ASD. It looks as though he is developing Epilepsy too, as he has had 3 generalised atonic seizures in the last 10 months, the last one this week. His doctor now wants to start him on Sodium Valproate.

Does anyone have any experience of giving this (e.g. Epilim) to a DC? The doctor says it takes about 4 weeks to build up to a therapeutic dose, and we are of course concerned about side affects and how it will affect him at school, as he does find some aspects of school hard. He is in Y4 at MS on School Action Plus.

Thanks

lougle Fri 07-Mar-14 18:35:03

DD1 was on it for some time. Tbh, we didn't notice much when she was on it, but when she came off again her teacher said it was 'like a switch had been flicked' and she was learning so much better. Some children don't have any side effects at all.

lougle Fri 07-Mar-14 18:35:19

Oh, and without a doubt the epilepsy is worse than the meds.

TooOrangeyForCrows Fri 07-Mar-14 18:50:56

Thanks for that, Lougle. We are trying to weigh up the risks of not medicating against any side affects. But then again, DS is having drop attacks, which could be harmful (so far, fortunately, no injuries) - so I guess it's simple, really. I just wish we could see a pattern, or even just understand the triggers. Just wishing for that crystal ball.........

Geneticsbunny Fri 07-Mar-14 18:52:47

My brother has been on it for at least 15 years. It has very few side effects and is very widely used as far as epilepsy meds go. lougle is right, seizures are really detremental to learning.

Geneticsbunny Fri 07-Mar-14 18:53:59

You might not have any side effects? And they can go away over time.

zzzzz Fri 07-Mar-14 20:04:13

Our experience of valproate wasn't great. I would say you should ALWAYS medicate, the trick is with what. The only way to find out is to try each med and see how it effects you. I personally think not medicating an active epilepsy is really dangerous. Lots of people take epilim with very little problem, ours raged and ate and learning was effected.

thriftychic Sat 08-Mar-14 18:36:41

ds2 has absence seizures and takes anti - epileptic medicine , its not epilim though its called zarontin . He built up the dose over 4 weeks and its been ok . I have noticed he eats a bit less and he had a phase of hiccups that lasted for hours ( a rare side effect apparently ) but the absences have stopped . He went unmedicated for a long time because in ds2 case it seemed mild and i was worried about the side effects of medication . I wish we had gone for the medication straight away now though because for a long time i had the worry in the back of my mind that he would have an absence that caused an accident .
you could try him on it and stop if it didnt work ( on advice from your doc though) but i would definately give it a go because i think in your case it would be dangerous not to. We were referred to the hospital , to an epilepsy clinic every few months and we also have a community epilepsy nurse that visits at home to check all is well . We only recently were put in touch with them so i would suggest asking what is available .
hope it works out {smile]

sami1985 Sun 09-Mar-14 20:52:52

Hi. My son also has ASD and started having tonic clinic seizures 3 years ago. after the fourth seizure he was put a n sodium valproate. 2 years after started meds, he has had no more seizures and is now off meds completely.

I'm so glad we put him on them and hope you have the same results!! x

TooOrangeyForCrows Sun 09-Mar-14 21:10:36

Many thanks for all your comments. It has been really helpful to hear your experiences, and I agree that the risks of not medicating are equal to, if not greater than, the risk of potential side affects. I think we are still coming to terms with the fact of the epilepsy, so that is making it harder to get the right perspective too. That was a good tip about the epilepsy nurse/clinic, and I am looking into that. Have also got info from the Epilepsy Society and NHS pages.

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