update on . . . long

[Guest guest]

Before I start, I'm not looking for advice, this is the hardest decision I've

ever made, possibly in my whole life. I don't want to get the " why don't you

get a second opinion " responses either, as there is no second opinion when

dealing with the military doctors: you go to who they tell you to go to and

either follow or not their advice. I know I've been complaining and whining a

lot lately, but it's what keeps me sane sometimes. My church thinks I'm so

strong, even when I break down in tears, like tonight at service. If you don't

feel like hearing the whine, skip to the bottom, I have a more positive

comment.....

I went to the Ped GI today. I came away a bit more confused than when I went

in, and it had nothing to do with the fact that I had to run around and keep 2

kids out of things by myself. First, it took me about 10 minutes to get

out of church (Bible study so he was in the nursery), love those lack of

transitioning skills, then I had to park in the parking garage (and walk about 2

blocks, or at least it felt like it), so I was late. They had already done a

call to see if I was there. Bad enough that I was alone because DH is in a

school that he can't get out of.

So, long story short, he misunderstood how was diagnosed autistic,

thinking it was based solely on his unruly behaviors. He didn't realize that a

PSYCHIATRIST had diagnosed him, thinking it had been a PSYCHOLOGIST. So he said

could still be autistic, because celiac doesn't explain the lining things

up and other behaviors. He asked a bunch of questions, like how soon did I

notice behaviors after I gave gluten....I told him 20 minutes after the first

dose. He said that's not celiac. Has he complained of stomach ache and

when...1 week into it. He said that could be celiac. We went back and forth

could be, isn't, etc. Bottom line, he took his blood (did use the emla cream -

which meant we had to drive home, eat and come back in 45 minutes - gave us 10

minutes to eat). He's going to test for the (antibodies? whatever it is that

shows up), and if the level is high, he'll do the biopsy next month. If the

numbers are low, he wants to wait a month, do another blood test and then

another month before the biopsy. So I decided I'm not going to put powder in

his food, but actually take him off the diet. can actually understand

that better. He can't understand why the foods he's been eating for the last 10

months with no tummy ache are suddenly causing a tummy ache. He quit eating all

pasta. And that way I don't feel like I'm poisoning my son. The bad part is

that he said the sure way of saying he definitely has celiac, even if the tests

come back negative, is if he falls off the weight curve. So basically, he has

to lose a lot of weight. I tried to convince him that we had already been

there, as he was 34-36 pounds for 3 years. We had to get a new growth chart for

him because there were too many dots at the same weight. He's going to review

his records (he has 2 volumes because he has so many). Silly Pediatric

department didn't tell me I had to bring them with me, so I gave permission for

him to get them (from the same hospital - go figure). We did verbally go over

all his surgeries, which gave me the opportunity to tell about his emergency

bowel resectional (that I had forgotten to mention the first appointment).

So we're looking at going off the gluten free diet for at least a month, maybe

2.

BUT, to add a good note to this: I received a reading program that I won the

bid on Ebay. It's the Phonics Factory. It has games, workbooks, tapes, looks

really good. And it starts out with the sounds of the letters. I asked

if he wanted to review the letter sounds, or go right into reading. He liked

having the choice, he chose review.....who wouldn't, right? Just have to give

choices that you want them to take....I could use the break of review, too.

Loriann

Wife to Dewight

Mom to , 10 years, DS-ASD, ADHD, ODD, possibly to lose all but DS and gain

Celiac

And , 17 months and Strong Willed