Steroids, Felbatol or Lamictal

April 9, 2010

Our son is almost 5. Has been having seizures almost his entire life but very

mild and the doctors didn't pick up on it until he was 2 1/2. Now the seizures

are out of control, he seizes over 90% of his sleep time (ESES) and has

thousands of seizures a day, mostly head drops, but could be staring spells,

collapsing, they change all the time. He used to be able to walk, run, color,

feed himself, etc now he can do none of those things. We have tried Keppra,

Depakote, Keotgenic Diet, Frisium(Clobazam), Banzel and one treatment of high

dose valium. His seizures got worse on Banzel so much worse that we were giving

him diastat everyday. Now he is only on valium, 10mg in am and 20mg before bed.

His head drops have subsided a great deal but still there and he is still having

tremendous difficulty sleeping and with fine and gross motor so we know the

seizures are still there. We are on our 5th seizure doctor and are now faced

with the fact that he is not a surgical candidate and he has no diagnosis or

understanding for why he is having seizures. Some doctors think it is a

Epileptic Encephalopothy meaning it is just the seizures causing all his

problems which we believe but others keep saying he has an undiagnosed condition

that they have no idea what it is that is causing his overall condition

including his seizures. All we know for a fact is any time we get seizure

control he starts to walk, learn, talk better, overall improvement. We are now

faced with a decision on what drug to use next and have been told it is

completely up to us so these are the 3 we are contemplating and would love any

feedback to help us make this decision. Steroids, Felbatol or Lamictal. Thanks

for any information you can share with us.

Recommended Posts