Re: Why should I follow the protocol?

[Guest guest]

Hi ,

Both of my boys are on the spectrum.  My oldest is 11 now. He still has an

Asperger diagnosis, but he is far better off than any other child I've

personally met with Asperger's, and I work at an outpatient therapy center for

autism.  When he started the protocol, he made dramatic improvements

immediately.  His CARS rating was done after those improvements, and he still

was rated right in the middle between moderate and severe autism.  The testers

admitted later that they found it hard to believe because of how bright and

happy he was and how well he was interacting, but they redid it without using

any of my input, assuming my belief in his autism was tipping the scales, and

whatever they did, they ended up with the same results.  That was one of the

best sales I ever got to give on the protocol, because I told them how much

better things were since we started these meds months before, but that his

doctor (Dr G at the time) had said that it would take time to fill in all the

developmental gaps.  If I had not fallen back on the diet after stopping the

meds, who knows if he'd even have the aspie diagnosis - and it's mainly his

difficulty keeping up w/his peers - no other particularly odd behavior anymore -

mostly just irritability and diminished social interaction.  And I still have

diet problems with him that I need to fix, and I've seen these things improve

enough that I haven't given up hope on a complete recovery when puberty hits if

I do my job with the foods.

We were on meds almost 3 years when finances (and my CFS) caused us to have to

stop the protocol.  My oldest son who had done so well did not regress any that

we could see, except typical irritability, and I periodically had to find foods

that were triggering problems.  However, my youngest son, who started the

diet by 9 months and didn't finish vaccines due to some serious reactions (no, I

don't believe vaccines cause autism but they sure can trigger seizures!), and by

15 months he was on an antifungal and 18 months on an antiviral.   Dr Goldberg

told me at the first visit " This little one here's blood work is a lot worse off

than his brothers ... if you hadn't caught this so early, he would have been

far more severe than his brother. "   He had typical development until 9 months

after stopping the meds (which I learned later that there seems to be a

nine-month window between stopping antivirals and seeing symptoms again).  But

the Chronic Fatigue Syndrome bout was bad news, and he regressed so badly for

months and months, then spiked a fever of 106.9 and brightened up for almost 9

months again, but didn't regain where he had been at five before stopping the

meds.  Then after that improvement from the fever, he started the same symptoms

again and this time I got off to Texas to see Dr .  Within 5 days he

was

dancing a jig and doing much better, but the cognitive issues are still hanging

around, and the school just recently gave him a PDD diagnosis, which I'm

not fighting just yet for IEP purposes, especially since I believe CFS and

autism are one and the same.

Anyway, they're doing well, not fully recovered, but some of that could have to

do with me.  I have had CFS and PANDAS, struggled with financial issues,

and haven't given them the therapy that would benefit them, and haven't been

as

devoted to diet as I should have been, but am working on again now (thanks to

Bill).

So that's our experience.  Not a total recovery, but such significant

improvement I could never be more grateful.  Also, a gap of almost 3 years

between meds probably delayed recovery as well.  But hey, time's not up yet. 

These kids so often get another big boost when puberty hits (even not on any

meds I hear great things from some people who's boys just hit

puberty).  Their

new insurance is going to have much better benefits for speech, OT, and mental

health, so I will utilize it.  And I'm going to move from a house with some

allergy problems that I can't get resolved.  And I'm going to tighten down that

diet. 

Before stopping the meds that first time, I believed absolutely my oldest would

be recovered in another couple of years.  Then I got strep and lost the next 4

years...

Hope that helps...

 

________________________________

From: wrightscott82 <wrightscott82@...>

Sent: Thu, August 5, 2010 9:19:42 AM

Subject: Why should I follow the protocol?

 

Hi,

I am new in this list. I have a child with severe autism.

Why should I follow the protocol?

Can somebody tell me how many children have recovered following the

protocol?

Thanks,