intractable seizure disorder

HelloI'm an intractable epileptic. I also sz frequently. I had two thoughts when reading your post and probably a lot of those thoughts are because I too have a son with epilepsy, also a 4 year old grand daughter.Every one has their own unique reactions to AEDs so I doubt anyone can give you a "magic" combination. I wish they could for your son, also for me. My son and grand daughter blessedly are, today, sz free. I've known epilepsy too imtimately to know it stays one way, all the time. From all of us, from what I've read, this syndrome morphs and changes. What my problems are today? I'll guarantee you will be different in 3 months. None of our futures can be absolutely predicted. On the other hand when my son was 19? His epilepsy changed dramatically. 5 years later it changed dramatically again. I was controlled for 5 months and have been out of control for 6 years. This seems to be a syndrome that morphs constantly. But I really don't think anyone can give you that "magic combination" because this syndrome is very individualized. I also feel the frustration, pain and your energy needs to go into a different direction because there just are no two of us alike and there just are no magic combinations. I sure don't blame you for wanting to know, ask either.My one medical suggestion would be though to seek other opinions. There is too much medical information for one doctor to know it all. I read a post the other day where a woman said it took her seven doctors to finally find her winning combination to lessen or stop her seizures. I also think at some point though for your son's sake you need to find your own acceptance. He will feel he has failed you if you can't find that peace and acceptance of what is yourself. I feel I can say this because I had several challenged children and they were very touchy to my feelings. At times for me too, that was very very hard.I hear your love for your son and I understand too your pain that he has this. If he has been declared intractable, consider it is that way for now, none of us know our futures. The goal for him I feel would be healthiest is to help him work with work around or with the problems he has. It's imperative to realize that the cup isn't only half empty - but also half full. I do know some limitations are going to exist. I live them too. But mental health is a big issue if you're an epileptic, also the support person for an epileptic. To keep optimal mental health for me I've found I need to stay on top of exploring what I can do, not what I can not, and tat helps my support people too. Many days that is hard to maintain. You're in a very good position to help him with this but any supportive person can also be unwittingly in a position to thrown the feeling to the one afflicted they have disappointed a parent, spouse, friend, whoever. I think if all of us can have that one accepting and supporting person it helps a great deal no matter what they must accept.This is very hard for you I know. I've been on both sides of the fence. Your role in his syndrome is very important and very hard. Have you considered seeing a therapist yourself? I did for grief counseling in a way I realize now. Because there is a grieving process going on when we see one of our children hurting, their lives tossed around. He needs you to be your healthiest best. I think that is a very tall order to do on your own.Hang in there Mom. The one thing I DO know is with time, many problems that seem like mountains we've walked around or over -but by golly we've gotten there or learned to accept. Sometimes we've all learned that things we've had to give up or accept weren't that important to begin with and we've found substitutions in our lives that have opened other doors.{{{{smoooch}}}}}}Gretchen

I have intractable seizures.all the different meds in the world don't control me.I've had epilepsy since I was 2 for 41 years.This month the 15th I go back my neuro and he has discussed putting me back on phenobarb.I also have the VNS it's decreased my seizures by 85-90% but I'm still going down.I'm allergic 4 meds med resistant to a lot of others. Belinda