and recovery

[Guest guest]

I guess I'm one who beleives this disease can be treated, but I think

there is some damage, probably in the gut, and possibly in the brain

as well which may be permanent.

" Recovery " to me would mean that my son could eat whatever he wanted -

- I mean, I had these dreams of passing down all the family recipes

from Sicily. Italian food is out, and that makes me sad as I LOVED

coming home from school and finding that my mother was making lasagna

or veal parmesean for dinner. My son will never get to know this

part of his heritage.

Recovery would mean that he doesn't get sick every other week like

has since initial regression.

I still hope for recovery, but I am so thankful for how far he's come.

He was completely non-verbal, everything had to be the same or he

would freak out and throw a horrendous temper tantrum. His schedule

had to be exact. He never slept for more than two hours at a time,

and he would wake screaming in pain in the middle of the night and

nothing we did would console him.

The severe constipation sent us to the emergency room many times.

Pneumonia has sent us to the emergency room many times, and asthma...

But the first time he got pneumonia and they treated him with heavy

duty IM antibiotics.... and on the fourth day of treatment he sat up

and said every word he had known before regression clear as a bell....

That is when I truly knew there was something biomedical going on --

something interferring with his communication... some kind of

bacteria that the antibiotics cleared up.

He regressed somewhat when the antibiotics were discontinued, but

with the gf/cf diet he slowly gained back and started sleeping

throught he night, and then a year later when we removed soy and

after about four days he said his first sentence....

And then there came the night where he crawled into our bed, looked

me in the eye and said, " I love you, Mama. " I cried tears of joy for

an hour. These were words the medical mainstream told me I would

never hear.

Then we realized that at age 3.5 he all ready knew the alphabet, and

at age four he could tell you the name of a state just by showing him

the puzzle piece backwards or forwards, and then at age 4.5 he knew

the state capitals.

This kid can do things on a computer that blow me away.

But there is still so much that is broken. Do I beleive in full

recovery? I certainly hope for it. If not my child, then please,

GOD, somebody's child. I'll take whatever steps forward we can, and

I will NEVER give up.

I am also one of those people who KNOWS what caused " autism " in my

son. I have no doubts. I wished I had banked his cord blood so I

coudl have it tested for heavy metals, tested for the MTHFR gene. I

would be interested in seeing if the anamolies were there or if, by

chance the HEP B given on the first day of his life, when his immune

system was so fragile and immature, when he was all ready yellow from

hyperbilirubin, somehow damaged his genes.

I beleive in treatment. I beleive in improvement. My son is a

testament to that.

He says the funniest things! I thank God for all the doctors and

parents who forged the way, and gave his voice back to him!

I'm glad is speaking out and I'm glad her son is doing well,

but it irks me and saddens me that it has to happen to a " famous "

person's child before anyone will begin to listen.

At least now I've gotten used to being considered " fringe "

and " crazy " in our little po-dunk town. Maybe if some of them saw her

they might not think I'm so crazy after all.

Just my two cents.

Haven