new member--tics and probiotics and practitioners

[Guest guest]

Hello,

My name is Esther and I have a young boy (nearly 9 years) on the autism

spectrum. We are in Indiana. After reading Dr. G's book, I have been thinking

of switching him to the protocol in the future. My only hesitation is that

he definitely showed signs of distress/ASD right from the beginning (no obvious

regression at any point due to some type of infection). We've only done the

dietary (mainly SCD, but with little to no nuts) and supplement portion of the

DAN protocol, and he is doing excellent (no behavioral problems and in regular

class without support and friends!). However, he has a tic and persistant

perservations (maybe OCD) that I believe are immune related (like PANDAS or

PITANDS). He's seeing an internationally recognized pediatric neurologist at

Cincinnati Children's hospital who should be able to determine if he has PANDAS

or TS or something else, so I am not switching anything until that appointment

in June. I'm also waiting for the website to be updated enough so that I

can have my pediatrician review the information and maybe get " on board " with

Dr. G's protocol or give me a referral.

I've been following this listserv for a short time. I have a few questions to

the veterans:

1. Are any of your children drug free and recovered? How long, on average, do

these children have to be on these types of meds? One thing that appeals to me

with NID protocol is finally getting my son off supplements in future.

2. I'm really curious about the probiotics. I really like them but it looks

like they are not recommended on Dr. G's protocol. I think my son has greatly

benefited from these. He has used a super-potent probiotic (VSL#3). Since

using this probiotic, he has no GI issues now, absorbs foods and is growing

better (after years of failure to thrive), no yeast, lower bacteria, lower

oxalates and great health. This winter, he was my only child (of 4) who did

not get the rotavirus--and my other children had 3 rounds of vomiting!! He

shares a bedroom with them and even a water bottle with one of them and still

did not get these viruses. It was amazing. He almost never gets sick.

Therefore, I'm really hesistant to ever stop using a probiotic.

3. Do any of you know when the site will be fully updated? It has a lot

of broken links and old forms. Another thing that I noticed is that the

advisory board list was removed. I think that I could possibly convince my

pediatrician to run some of these tests or get a referral to Dr. G, but having

an updated site would be of great benefit. Just wondering.

4. Do any of you know what Dr. G thinks about IVIG? I know this is pretty

controversial and not recommended unless a child has PANDAS without benefit from

other meds.

Thanks for your advice in advance!

Esther