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Grow out of seizures???
Sun, 05/21/2006 - 21:52Topic: Parents & Caregivers
Hey, have you other parents out there heard that your child could grow out of their seizure disorder? My Zakry has idiopathic epi, so does that mean that he should be able to grow out of it? We are running one more metabolic test, but that's just to be safe (we thought he had MSUD). Has anyone else heard this? Has anyone else had an experience where someone "grew out of it?" Just looking for the positive!
Comments
Re: Grow out of seizures???
Submitted by ekoorb on Wed, 2009-03-25 - 18:47
Got it! I am glad things are going well for your daugther and I am glad you were able to help your doc figure things out. The best thing we did was find a Pediatric Epilepsy Specialist. I think a lot of people don't realize they can find a doc who only focuses on epilepsy. The benefit was he knew exactly what BOCE was and diagnosed our daughter. Take care.
Re: Re: Grow out of seizures???
Submitted by gretchen1 on Sat, 2006-05-27 - 00:07
How I could forget this - search me. I've even hesitated to post it, but? It's more info on the heap and I'm assuming that's what we all want. My son was diagnosed when he was 7 weeks ago. By the age of 19 his sz's just suddenly stopped. I couldn't figure the timing out either because he'd just started college which was inordinately stressful for him, he was away from the home the first time and very homesick. He made comments like he felt different, more clear headed, other things I can't remember. Eventually he went off of his AEDs, still didn't sz - for 6 years. His neuro at that time said it was neither expected nor unexpected in his type of epilepsy. He could start sz'ing again or never but he would always have epilepsy he said and a low sz threshhold, now that is in HIS case. After a few years, I didn't believe he had anymore. Howver, we had a very stressful family occurrence 6 years later and? He started sz'ing again and is now back on AEDs, has to watch his triggers or he has break throughs but if he is very careful with all his triggers, he does well. And? Who knows maybe him, his daughter, one of my daughters, might stop for awhile, or longer than while, too. Anything's possible I now believe, at least for us. But I will say as wonderful as those years were for him when he quit sz'ing, was at last and for the first time off of AEDs? I think he never could let go of the nagging worry, how long will it last.
Gretchen
Re: Grow out of seizures???
Submitted by KMolder on Wed, 2009-03-25 - 11:12
Ekoorb,
I must not have reread my post before sending it, it was vague. What I was trying to say was that you were very knowledgeable on this subject and that My daughter was another case in point. Additionally, I wanted to reiterate your posts by saying we had to do the reasearch ourselves and that our doctor had never heard of Panayiotopoulos Syndrome and was not willing to recognize it until we (my husband and myself) provided him with information he could not deny. Additionally, is the fact that I called 27+ neurologists in the state and non had ever heard of Panayiotopoulos Syndrome, so I agree with you totally, knowledge is key for doctors, children, and families in everyway. Sorry I was not so clear, sometimes I get very upset at the way our US doctors seem to treat our children in an assembly line fashion without recognising that there are many different classifications that should be treated differently not the same. Thanks :)
Ekoorb,
I must not have reread my post before sending it, it was vague. What I was trying to say was that you were very knowledgeable on this subject and that My daughter was another case in point. Additionally, I wanted to reiterate your posts by saying we had to do the reasearch ourselves and that our doctor had never heard of Panayiotopoulos Syndrome and was not willing to recognize it until we (my husband and myself) provided him with information he could not deny. Additionally, is the fact that I called 27+ neurologists in the state and non had ever heard of Panayiotopoulos Syndrome, so I agree with you totally, knowledge is key for doctors, children, and families in everyway. Sorry I was not so clear, sometimes I get very upset at the way our US doctors seem to treat our children in an assembly line fashion without recognising that there are many different classifications that should be treated differently not the same. Thanks :)