GFCF Diet: PDD & Seizure Disorder

August 18, 2001

Hi, I've just recently joined this group and was wondering if anyone

could help me. My now 7 year old son was diagnosed with mild PDD in

Jan. 2000, and had previously been diagnosed with ADD in Oct. 99. In

Aug. 2000, he developed a rare seizure disorder called ESES, which

occurs during sleep.

He is currently on Concerta for attention and Klonopin for seizures.

Because he continues to have break-through seizures and also because

his EEG (7/01) was abnormal, the neurologist is talking about

changing his anti-convulsant from Klonopin to probably Depakene.

My son has been GFCF for 4 weeks. I think all traces of gluten and

casein are out, but not absolutely sure.

Anyway, my son's problems consist of language delays, fine motor

difficulties, trouble maintaining eye contact, and cognitive

difficulties: all consistent with a diagnosis of PDD and ESES. He

has never exhibited stereotypical autistic behaviors, and by most

accounts his problems are pretty subtle.

In May 2001 (one month before removing casein) he started a very

troubling behavior. He has starting running away from me. Most

frightening is when he darts away from me in a busy parking lot. This

behavior has increased the last month or so (during the time period

that he has been on the diet.)He also seems to be more hyperactive.

I have been unable to decide if these behaviors are related to the

abnormal electrical activity that is going on in his brain, the

withdrawal of the gluten and casein from his system, or if he just

thinks it is a game, or even if it's his way of exhibiting power over

me. Any ideas out there????

Also, even though I've tried to do one intervention at a time so that

I could determine if anything is making a difference for him, there

could be some over-lap:

6/11/01 Modified casein-free diet

6/25/01 Totally casein-free

7/9/01 Totally gluten-free

7/24/01 Started on Nu-thera (mega-doses of vitamin B6_

8/10/01 Magnesium added in attempt to help hyperactivity

I have some DMG here that I am very anxious to try with him, but feel

that I need to wait until his new anti-convulsant is added so as to

not further confuse the issue.

Any ideas or suggestions from any of you would be greatly

appreciated.....

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