Nell: Re: Lack of progress, ANDY your comments please?

[Guest guest]

>

> >But, sadly, we have lost almost all of

> > the gains we've made.

>

> Oh Anita, my heart is breaking with you.

You are so kind Nell. My heart is broken too, but I tell you with

all sincerity, the lovely generous responses I've received from the

lovely people like you on this board are patching it up again.

>

> Do you think that something is masking the gains -- a food thing, an

> intolerance reaction, something?

This is what I've been chasing for some time. The only diet left to

try is SCD. I've eliminated at one time or another almost all the

possible foods that people have trouble with. As far as intolerance,

I worry constantly that I am missing signs of intolerance. DS

doesn't seem to react to most things. Bad reaction to apple juice,

lip glut. That's about all I can think of. Maybe my son's

intolerances are like a slow burn. Very hard to detect because there

is no immediate response.

>

> I'm going to try to think about this. Would you rank the

interventions

> in order of which things got the best inital response, even if that

> response faded?

Best response by far was to GFCF. Went from 5 words back almost to

where he was before his regression, to about 70 words. Started

trying to engage us in chase games. Started sleeping. Tried GFCF a

second time without a single gain.

First 10 rounds or so of chelation gave us good gains. Spark back in

his eye. More affection. Nothing since then and things like the

spark in his eye are only very sporadic.

Viral protocol gave us some good stuff. Lost everything except love

of swimming and willingness to eat some new foods (diminished).

HBOT gave us regular poops, great sleep, better energy, and one

spectacular day of language. Lost all of that.

A few supps like the custom blend aminos and l-carnitine have helped

somewhat with energy. Inflammation control gave us a few great days

of acknowledging brother and sister, but then gone. Oxypowder deals

with constipation. Probiotics and antifungals seem to keep the yeast

at bay.

Thanks so much Nell. You've been helping me (and making me laugh)

for close to two years now :-)

Gratefully,

Anita

>

> Nell

>