Susan,

Hi- I don't have answers for all your questions, but you may also want to
consult the Ketogenic yahoo webgroup- there are over 500 members there with some
good expertise. I wasn't sure if in your post you meant that you don't see
seizure activity physically in your child- just on the EEG? I am not sure what
they're able to tell by that.

The diet is usually recommended for children with frequent seizures when meds
have failed or lost their effectiveness. Some conditions, however, benefit
better by starting the diet early on before any meds are tried. Our 3 yr old son
Noah started the diet after 1 med failed to work- only made things very worse.
Before starting the diet he was having 200 or more absence and myolconic
seizures a day. He was seizure-free by the time we left the hospital from
starting the diet. It has been our miracle!

I would consult your doctor regarding your interest and if he is not helpful or
knowledgable enough, try one that is (maybe at a Children's hospital) and/or The
Ketogenic Diet book by John Freeman.

As for the current med, watch out for those side effects. You may see that the
side effects are worse than the condition it was treating in the first place.
Many times it is the side effects that cause the child to be in special ed or
developmentally behind- not the seizures!!

I hope you find the answers you need- and again you may also want to check out
the other Ketogenic webgroup.

Stephanie
Mom to Noah- age 3, med-free, & seizure-free on the keto diet
Susan <susanwald@...> wrote:
Hi,

New to your "club" at least :-) Boy, itsn't this a club we all don't want to be
in? I'm also in the autism club. The good thing about that though is I have met
the most incredible people on our journey.

I have a son who will be 8 on Sat. He had an EEG on Dec. 28 as a "rule out."
He has late onset autism, and after 6 years a doc finally said we should do a
rule out EEG. They said he has "seizure activity" on the left side of his
brain. He had visible absence seizures as a toddler (I know in hindsight). He
doesn't stare like that any more, so I don't really know how his "activity"
manifests itself. He did have a wierd eye flutter that I haven't noticed lately
(even before meds) but was still present.

You all are the most active kids chat group I could find, so I hope you don't
mind my questions:
1. Based on a short (>1 hr.) sleeping EEG will they know how often my son
seizes? What questions should I be asking our neuro?
2. Is the keto diet good for this type of child? He has been on Trileptal for
three weeks. In that time he has regressed 2 years in language and skills,
cognition, etc. He already had a 4 yr. language delay so we're in trouble. He
was doing better off the meds and seizing.
3. Has anyone had the experience of such bad side effects and then the meds
being effective after 3 weeks? Reading the archives it seems like bad side
effects are pretty much how it is.
4. My hope is that this seizure stuff is the root of his "autism." He is very
high functioning. I feel like if his brain pattern could even out he could come
out of all this. Am I delusional?

Susan

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