Re: PANDAS/Dr. Neubrander - Kiim

[Guest guest]

Dear Kim,

I hear what you are saying. I've been trying to maintain some balance

in my daughter's life for 6 years now, and it is a constant process.

My daughter has CSWS (Continual Spike Wave During Slow Sleep) which

she developed at 3. The result was a total regression of all her

gained skills, and constant subclinical epileptiform activity that

finally was brought under control with Prednisone. Thankfully the

seizures are gone, but she is now left with metabolic issues and

" autistic behaviors. " Not sure if that is really a label, but it is

what her Neurology reports say... so that is how we are treating her.

Regarding diet: She was on a very strict Ketogenic Diet for 5 years.

Believe me, I went through all the same feelings that you mention.

Here was my kid eating a tiny bit of food, and of that food it was

mostly fats, while I cooked Thanksgiving dinner. It broke my heart,

but we all made the best of it because watching her seize was so much

worse. We got to a point where we refined her diet with more

delightful foods, Nut butters instead of butter, avocado, etc.

The funny thing is that she never felt deprived, it was my

projection...our kids are troopers...more than us sometimes.

About therapy: for the first 5 years of her treatment we had a

fantastic neurologist who's M.O. was: Let her be a kid. Go easy on

the heavy therapy schedules. Take her to the beach, let her have some

fun. So we did. She has loads of speech therapy, and has had lots of

SI, OT and PT, but we stopped much of it (aside from speech and the

therapy she gets at school.) She is in a highly structured classroom

and she loves it. So we're getting somewhere. :-)

Hang in there Kim. Listen to your gut feelings and remember that

things will get easier. Life without a healthy system will make

happy kids in the end.

best,

On Jan 21, 2008, at 10:52 AM, wrote:

>> Has anyone heard of PANDAS? Dr. Neubrander thinks my son has it,

> along with PDD. Dr. Neubrander just sent me his protocol. It is

> overwhelming. I know that we don't have to do it all, and I want to

> help my son. But how much can one little person put up with. He is

> g/c free, which basically means he doesn't get to eat anything good.

> He is on so many supplements, which means he never gets to drink

> anyhting without it tasting terrible. We have started the b-12

> shots. He gets 30 hours a week of ABA, one hour of OT, one hour of

> FT etc. I just feel sorry for our kids. When do they just get to

> be..............????????????? Kim

Shur

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