getting discouraged...not seeing it

[Guest guest]

Hi Tamara,

My son is pdd he is 2 1/2 and was put on the diet by his nuero

developmentalist because of his smelly bm's. He was on the diet for about 2

1/2mos or maybe a little more. I did not see a change in his bm's or in his

behavior as a matter of fact his bm's were worse. He was taken off the diet

he has 10 words now and is doing well.

I do believe he some GI problem but I wont find out till he sees the

specialist in June.

I have read thing on things on this sight about children doing very well on

the diet and I felt just like you. They say that you have to be on the diet

for at least a 1yr to see some progress. I chose not to do the diet and he's

doing well, but he does get other services ABA, Speech, and OT and I know

this is the best thing for my boy.

Good luck with your decision

Rebekha

N.Y.

[Guest guest]

Hi everyone:

I have been thinking about challenging the diet and would like some

suggestions.

We started the diet with Ebony three months ago. I really do not see any

improvements that can be attributed to the diet. She is still non-verbal,

which isone of the areas I was hoping to see some improvement. Her sleep

is, if anything, worse, not better. Her BM's are not any different, except

more smelly now that we are doing acidophilus. (I know for a fact there was

a yeast problem...getting better now, though)

She has actually increased stimming since beginning the diet...lining things

up and looking at her hands a lot. She has shown more appropriate

interactions at school, but that coincided with the introduction of Zoloft,

so I tend to think that it was the med.

Ebony did not ever gain language or develop normally, except physically, and

then lose the skill. We are spending an awful lot of time and money on this

and to not see any positive results is dis-heartening.

What do you all think? I am thinking about making her a pizza and seeing

how she does with it.....I just hate to admit that this didn't work. I had

such very high hopes.

Tamara, mom to Ebony-3 1/2, ASD & -1 month

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[Guest guest]

I think before I throw in the towel, I'd want to make absolutely sure

I'd eliminated all the " hidden " sources of gluten. It's in a lot of

unexpected places, like vinegar, lotions, Chap-Stick, and it is

absorbed through the skin.

I know it's discouraging, but the upside is very great, and you've

already invested so much. Try to hang in there. We're with you...

Joe Gallant

> Hi everyone:

>

> I have been thinking about challenging the diet and would like some

> suggestions.

>

> We started the diet with Ebony three months ago. I really do not

see any

> improvements that can be attributed to the diet. She is still non-

verbal,

> which isone of the areas I was hoping to see some improvement. Her

sleep

> is, if anything, worse, not better. Her BM's are not any

different, except

> more smelly now that we are doing acidophilus. (I know for a fact

there was

> a yeast problem...getting better now, though)

> She has actually increased stimming since beginning the

diet...lining things

> up and looking at her hands a lot. She has shown more appropriate

> interactions at school, but that coincided with the introduction of

Zoloft,

> so I tend to think that it was the med.

>

> Ebony did not ever gain language or develop normally, except

physically, and

> then lose the skill. We are spending an awful lot of time and

money on this

> and to not see any positive results is dis-heartening.

>

> What do you all think? I am thinking about making her a pizza and

seeing

> how she does with it.....I just to admit that this didn't

work. I had

> such very high hopes.

>

>

>

> Tamara, mom to Ebony-3 1/2, ASD & -1 month

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

It is so hard not to see the same results that it seems everyone

else is having. My daughter was seven when she began the

diet, and her progress was not dramatic at all, in fact, a lot of the

time in the first six months, I thought she was getting worse.

Now, after 16 months on the diet, I look back at what our life

used to be like, and I am so very grateful for this list and for the

diet. She has improved so much!!! We also removed some food

allergens around the 6 month mark; that seemed to make a big

difference. And the supplement that showed the most dramatic

result for us, especially in language, was DMG. Have you tried

it?

Good luck in whatever you decide. You can always try again later

if you decide to take her off now. But for us, the first few months

were so difficult, I wouldn't want to go through them again!!

Kathy

[Guest guest]

getting discouraged...not seeing it

> Hi everyone:

>

> I have been thinking about challenging the diet and would like some

> suggestions.

>

> If your child had substantial bowel problems before the diet you should

not give up. Casein and gluten may not be all the problem but they are part

of it.

If your child did not have a substantial bowel problem before the diet you

may have a child where diet is not an issue. At your childs age you should

also look at ABA therapy as well as continuing to address the biological

issues. May you be blessed with strength.

Best wishes for all our children.

.

[Guest guest]

Please don't give up yet. But if you have to stop for sanity's sake, start

with a glass of lactose-free milk and stay on the diet for a few days to look

for a reaction. Add wheat back slowly if you see none.

If you do see a reaction, try a rotation diet to get out any other allergens

(apples, bananas, corn, soy) and by all means try DMG and folic acid--it took

us about five months to hear speech and see differences in BMs, etc. It's

worth it in the long run. (In the short run, yeah, it's a pain in the butt,

expensive, yadda, yadda, yadda, especially with a newborn. ((I bow to your

formidable energy.)) We need a patron saint for autism for all of us martyr

mothers....St. Willowby of the Rice Flour or something.) Take care. Sending

positive vibes your way....

in San Diego, Catholic school reject

mom to Kathy, ASD, 3yrs. old

jagallnt@... wrote:

> I think before I throw in the towel, I'd want to make absolutely sure

> I'd eliminated all the " hidden " sources of gluten.

>

[Guest guest]

We need a patron saint for autism for all of us martyr

> mothers....St. Willowby of the Rice Flour or something.)

LOL!! I've been thinking of starting a novena to St Jude, the patron

Saint of Desperate Causes... If only I could find the time! :^)

Hugs-

Sue

[Guest guest]

Evan has never had much of a bowel problem except for some constipation now

and then or maybe diarrhea when he eats too many prunes but that is natural.

His improvement with the diet has been slight compared to others but there

has been some improvement and I can tell when he has an infringement most of

the time. No bowel problems was one of the reasons I waited so long to do

the diet. He just did not seem to fit the criteria of one the diet would be

good for. Now I just believe that I must take out even more. I am just

wondering what I will do for gfcf milk sub without corn or soy. I really

hate to lose Dari-Free.

Betty

----- Original Message -----

> If your child did not have a substantial bowel problem before the diet you

> may have a child where diet is not an issue. At your childs age you should

> also look at ABA therapy as well as continuing to address the biological

> issues. May you be blessed with strength.

> Best wishes for all our children.

> .

[Guest guest]

Tamara -

I know this diet is hard and expensive, but 3 months isn't that long.

I think also you should double check what you are giving her, there

may be some hidden gluten or a cross contamination issue - I know

that I would love to drop this diet, it would make life so much

easier, but you really need to give it 100% for awhile to make sure

that it isn't needed and then if you do decide to drop it, do

challenges and watch her reaction. It may be that her improvements

are very gradual and you will see regression with a challenge.

Also, I have heard a lot of kids stim more when going through initial

withdrawal on this diet and they have sleep problems too - hang in

there, you may be just about to turn a corner.

I hope you see something very soon that will reward you for all your

hard work, we were lucky we got our proof when my son regressed after

a dietary infraction - that made it easier to do all this hard work.

Hang in there.

Moira