EPILEPSY COMMUNITY
33 seizures in 5 days & only 3 years old! PLEASE HELP

33 seizures in 5 days & only 3 years old! PLEASE HELP

My son is 3 and a half and has Angleman Syndrome. Last friday (31st oct 08) he started having epiletic seizures, we have been backwads and forwards to our local A&E hospital and finally got to see a doctor at the Evelina Children's Hospital in London yesterday who has perscribed Sodium Valproate. The only problem is that we can only increase the dose by 1ml per week, so it is going to take 6 weeks to get to the right dose. He has now had 33 seizures in 4 and a half days! we keep leaving messages for the consultant to call us & cant get a reply. Please can someone help us as 33 seizures in that short ammount of time cant be safe.
Thanks
Dave
(Morgan's Dad)
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Hi

Got to this link!

http://www.angelman.org/angel/index.php?id=89

I see that in the second paragraph of this page it stipulates that "About as often as not, Angelman children initially will not get better, and may get worse, with anticonvulsant **************."

Hope you find out what's wrong.
Frankie
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My daughter has Angelman's and started having seizures at 13 months - we had a very bad day right before she was medicated and she was having clusters of 5 separated by 30 seconds with the clusters separated by about 5 minutes - that went on for about an hour. She was put on Depakote (sodium valproate) and has had great results. She had lost a lot of ground when she was having seizures, but slowly recovered it as soon as the seizures were under control. We haven't had an identifiable seizure since about a week after she started medication. Hope this helps!
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