Chat and Community Forums Closed

Due to the popularity of social media, we have seen decreasing engagement on our forums and chat. Please know we want to keep talking to you about epilepsy, seizures, and what you need. We want to stay connected with you.

Community Forum

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

My sweet baby girl was just

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 

My sweet baby girl was just

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 

Hey frank I am in Washington

Hey frank I am in Washington too and my baby in my belly was just diagnosed unilateral open lip hoping you can guide me to any specialist you have found here in wa or rally anywhere. Thank you! 

Open lip

Open lip

My sweet baby girl was just

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 

Hey frank I am in Washington

Hey frank I am in Washington too and my baby in my belly was just diagnosed unilateral open lip hoping you can guide me to any specialist you have found here in wa or rally anywhere. Thank you! 

I am actually diagnosed with

I am actually diagnosed with this myself. I had my first grand mal at age 13. My first one the doctors just thought that it was a freak accident (because i hit my head they thought that caused the seizure)  and dismissed it thinking it wouldn't happen again. I had my second one during a football game and was rushed off the field. The next day I was on  put on Keppra but the seizures did not stop and i felt depressed. I don't know if It was side effects of the medicine or that i knew my football career and dream of being an airline pilot were crushed. Anyway I switched to Trileptal and they went away for about 3 years until I got to college. Now I seem to have them about three times a year and that has been my regular pattern as of late. One thing that i may add is even though do not live in a medical state I used marijuana regularly for about a year and that was a year free of seizure activity. Mine seem to be triggered by  me being startled. As the last one i had was set off by i dropped a box full of glass that broke and it scared me into a seizure. I also take Paxil to help with cope with the anxiety and panic attacks that go along with having seizures. 

Our Mission

The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

 
24/7 helpline
P