Re: abnormal EEGs, epilepsy and GFCF diet; sorry, long :c).

[Guest guest]

I have three children on the GFCF diet. We have been consistent

(other than accidental infringements) since February 5. My eldest

daughter has absence seizures, and has been medicated since spring of

2000. Her eeg's are all over the place *s* (as of September 2000).

In the fall of 2000, it appeared that her meds were not working. Her

neurologist wanted her to go up one more pill (4pills per day). We

started monkeying around with diet for another child, and her

spaciness episodes seemed to disappear. Once we went full-speed

ahead with the diet, her spaciness (which is generally a precursor to

actual absence seizures) only returned with infringements.

Two weeks ago I reduced her medication to 2 pills a day ... she is

fine. I had spoken with her neurologist and he previously said that

there is no way that the diet can have an affect on her seizures. Of

course, he thinks the GFCF diet is quackery :c). She did have an MRI

to check for calcified lesions as per seizures caused by celiac

disease. There were none (or none visible!). She has not recently

had an eeg so I can't say if the diet has helped. The only thing I

know is that the diet has enabled me to reduce her medication. She

is now on half of what the neuro. recommended (I'm talking dosage,

not blood level here), and it appears to me that when we infringe,

her spaciness gets worse.

My other two (and myself!)have immediate and obvious

gastro/behavioural/communication responses; this is a lot more subtle

but I have a feeling that there is something there (and this is

something I wasn't expecting or looking for). I know that we

infringe on the diet I feel very drugged, have word finding problems

and other issues; whether this affects an EEG I don't know.

If you give it a try, be sure to let me know if there is any

improvement in your child's EEG. I'm not sure when my dd is due for

another but I will post the results if you are interested.

- In GFCFKids@y..., rowleyh@c... wrote:

> Hi,

>

> My daughter has not been truly diagnosed with autism but is

somewhere

> on the spectrum so we thought we would try the diet anyway. We

have

> been on it for 1 1/2 months.

>

> My questions to anyone out there who will respond are:

>

> 1. Has this diet helped children with abnormal EEGs? My daughter

> has some epileptic activity but no seizures, as of yet. I am

> wondering if this diet will work if the cause is from the epileptic

> waves and not from an allergy to a certain food. Or can an allergy

> to a certain food cause epileptic waves and therefore cause autisic

> behavior?

>

> 2. I am having trouble with the diet when my daughter is away from

> home. At home I can control what she eats. Away from home she

might

> snag someone's Cheetos or pretzels or whatever. Has this happened

to

> someone and what do I need to do? I don't see how I can go

anywhere

> where I'm not totally on her making sure someone doesn't give her

> something forbidden or she steals it.

>

> Thanks,

>

> Sandy Rowley