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Grow out of seizures???

Sun, 05/21/2006 - 21:52
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

Hi.. All 'idiopathic' means

Submitted by solis on Mon, 2006-05-22 - 01:49
Hi.. All 'idiopathic' means is that no known cause exists (very typical - about 50% of cases) It has absolutely nothing to do with any possibility of being 'outgrown'. As one who had epilepsy since I was three years old, the positive is that you need to learn about epilepsy so you can accept your son no matter what. I'm sure if he had become diabetic you'd have np, but sadly epilepsy remains misunderstood (and feared) by parents. I can assure you that whatever you 'see' he is most likely unaware of so the fear you may have is needless as 'his'mind is asleep.. & he is unaware of the show you are experiencing. What he will note and what can have an enormous effect on a child (been there) is your reaction to what he can't control. Yes, of course, continue to search for meds that control his seizures (75% of epileptics are completely controlled) but for now, try not to focus on his seizures to such a degree and hug him as he needs to know you accept and love him regardless. While it's true that 'some' types of seizures are outgrown, the vast majority aren't. In fact, many people here were told they'd likely outgrow seizures and didn't. So I'd recommend you find an epileptologist (a neurologist that specializes in epilepsy), educate yourself (epilepsy.com is a great information source) and, again, accept your son as he is for now. ~sol

Re: Hi.. All 'idiopathic' means

Submitted by Mel on Wed, 2006-05-24 - 04:56
My 6 year old daughter has been diagnosed with idiopathic seizures. Our journey has been frustrating. It seems we can not get clear answers. I think alot of Dr. just don't know what is causing the seizures and what will make them better. I believe alot of Dr. are afraid to say "I do not know". Our daughter has failed four medications. We have heard her seizures may go away. With every seizure and every failed medication. That hope seems to illude us. I have talked to mom's who have kids who have had a one or two seizures and they have outgrown the seizures. My daughter has had 30 seizures this year. I still hope she will outgrow her seizures.I hope your child will out grow seizures also. FYI-As for MSUD, I have alot of experience with MSUD. My cousin who has been like a sister-was diagnosed with MSUD a couple days after birth. She is now 36 years old. Seizure free. I think it very unlikly your child has MSUD. Children with MSUD can only withstand trace amounts of protein before becoming gravely ill. If you are searching for a metobolic problem. Amish Dr. in Pennsylvania are the experts on these rare diseases. Check to see if newborn screening in your state tested for MSUD. Then look into PKU. I do beleieve there is a relationship between these rare metobolic problems, Ketones and seizures.

Re: Grow out of seizures???

Submitted by ImaCrazyMom on Wed, 2006-05-24 - 22:05
Actually, I 'outgrew' my epilepsy. I was diagnosed 28 years ago, at the age of 7, with "petit mal" seizures... now known as absence seizures, I believe. I lived with seizures until about the age of 13, when I remember having my last one. I remember because the doc had told me that when I was 2 years seizure free, I could come off all my meds. I had 6 months left when I had that last one. I didn't tell my mom, cuz I thought being med free would make me normal. (Little did I know :-) That was the last one, though. I have never had one since. My neurologist told my mom that as there was no reason for me to have the seizures, I would outgrow them, probably within 7 years of the onset. That I did.

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