Community Forum Archive
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schizencephaly
Tue, 07/23/2013 - 20:28Hi
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
My sweet baby girl was just
Submitted by Jodiewa on Tue, 2018-08-14 - 07:49
My sweet baby girl was just diagnosed with Unilateral schizencephaly I am 22 weeks pregnant. I'm really looking for a high risk ob, neurologist and pediatrician who have worked with fetus-newborn- toddler with these same findings. I would really love to talk to parents with similar findings as well. I'm in Washington state and working with the university of Washington and Childerns hospital but finding it difficult to find specialist that encountered this I'm willing to travel to talk to specialist. Thanks in advance~ Jodie