Fighting the School System

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

My daughter just started having seizures in June (actually April that were unnoticed I believe) so she hasnt gone to school with this condition yet. I am very nervous! She has an IEP already so Im not real sure where to go from here. Her seizures have all been during sleep and Im terrified she will have one at school. I appreciated reading all of your comments and concerns. Such smart people here on CWE :)
 
My son has been on the Ketogenic diet for a year and a half. After the first 6 weeks, he was seizure free for 11 months, then after a severe illness and weight loss, he began having a few breakthrough seizures. But all in all, the diet has been much more effective than any of the 5 medications our son has failed, and without the horrible side effects. I highly recommend it.

As far as having the IEP "enforce" the diet -- well, I'm not sure how that would work. We never wrote it into his IEP -- all that was required was for me to send his food in to school each day (like lots of kids who bring a bag lunch). And to make sure he didn't get any unauthorized snacks at school.
 
LisaBee, if your daughter already has an IEP in place (that was written before the seizures started) then you need to contact the facilitator at your school about getting an emergency plan written up -- you probably don't need a new IEP at this point -- just have an emergency plan for school and on the bus (if applicable). And if your daughter's doctor has prescribe diastat or something like that, you'll want to have one that you keep at home (or take with you when you're out with her) and have one kept at the school.

I wouldn't be too worried about her having a seizure at school. Our son had nighttime seizures for years, and never had one in school.
 
You must log in or register to reply here.
Back
Top Bottom