Re: GFCF Diet: PDD & Seizure Disorder

[Guest guest]

> > 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.

I don't know anything about this specific seizure disorder, but I have

read several parents on this message board indicate that once they

removed the gluten from their child's diet, the seizures reduced or

eliminated. So you might want to keep an eye on that for your own

son.

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

hyperactive.

> > 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

Hyperactivity can be a sign of high phenol intolerance. Mega doses of

B6 can aggravate this problem in phenol-intolerant children, so you

might want to eliminate the mega B6 for a week or two and see if your

child's hyperactivity level reduces. Here is more information on

that.

http://home.pacbell.net/cscomp/phenol.htm

> >

> > 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.

I would definitely recommend only doing one thing at a time, so you

can judge what works, what does not work, and what is negative.

>

[Guest guest]

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

>

You've mentioned diet and suppliments but not dates for when

medications/anticonvulsants were introduced could these have anything

to do with the problem, it's worth checking out.

Check the drugs being given for additives ie lactose, milk proteins,

gluten, dyes and colourants ie

amaranth,brilliant blue,erythosine,indigo caramine, methyl blue, new

coccine, ponceau, sunset yellow, quinoline yellow, tartrazine, d & c

yellowno 11, indigo carmine, neutral red, quinoline yellow etc.,

preservatives ie propyl gallate, sulphites, benzyl alcahol etc.

flavourings and sweeteners ie methanol, lemon oil, saccharin,

sucrose,sorbitol,asparatame and fructose.

It's really surprising just what drugs can contain.

anti convulsant drugs definately made my son far worse, anyway i hope

you find the culprit/s

Casein leaves the body quickly Gluten may take some months.

What does ESES stand for?

Best wishes,

Margaret.

> 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.....

[Guest guest]

He was put on Klonopin, the anti-convulsant 9/00, and started

Concerta for attention in 3/00. He had previously been on Adderall;

the Concerta seemed to be more effective for him.

I have checked with the drug companies for GFCF status, and was

informed that neither medication contains gluten or casein. Didn't

think to ask them about all the additives you mentioned. What should

I do if I find out that they do, indeed contain the items you noted?

ESES stands for Electrical Status Epilepticus during Sleep Syndrome.

(Are you sorry you asked? It's a mouth-full!!!)

> > 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.....