schizencephaly

Hi

My daughter had her first grand mal seizure at age 17.   One week later she was diagnosed with a congenital brain  malformation called a , schizencephaly.   She has a very mild form of this disorder.   We had no clues or symptoms until this first seizure.     She was placed on Keppra and all the seizures since this time have been partial focal seizures.     We have continued to increase her Keppra dose as the seizures occur.  Over a two year period we have maxed out on the keppra dose,  2000mg am and pm.     The doctor is talking about  changing her to Trileptal.     Anyone out there with any similar situation.    I havent heard form many parents with children with a schizencephaly mild form.   I would love to hear from more and share experieces.    cindy

 

Comments

Re: schizencephaly

Are you still checking in with this site?  Hi. I wanted to share with you about my daughter with open lip unilateral schizencephaly.

She wasn't officially dx'd until she was 10 y/o.  But, wrongly dx'd at 5 y/o with porencephaly.

She became epileptic at age 10.  She had complex partial seizures for about  the next 8 yrs, treatment was Topamax.  As she also suffers from migraine disorder.  She had her first tonic clonic a couple of years ago, and that neurologist we used those years was not good for her.  We switched to another specialist who put her on Keppra (1000mg) 500 day/500 night, and she has not had any seizures since (2 yrs and counting)

Re: schizencephaly

I am not familiar with schizencephaly. However I do know a lot about Keppra. The maximum dosage is 4500mg a day.  Keppra has reduced the number od seizure I was having and the length of time in the seizures and focus time.

My neuro is not taking me off keppra but is adding Vimpat at a low dosage and since the addition for the last 3 months I have had even half. Instead of 3-4 seizures a week I now have 1-2 in a 10 day span. I have several types of seizures and partial seizures is just 1 type.

I hope this helps

Good luck at getting her seizures under control

Joe