Re: Help! We're so new to this.

[Guest guest]

In a message dated 2/18/01 2:15:35 AM Eastern Standard Time, uuitt@...

writes:

>

>

> My 22 month old has started on the GFCF diet (3rd day), and his

> autistic behaviors have escalated. It's driving me nuts. Does this

> happen for some kids like this? Does it mean the diet is working?

>

> Usually he's calmer, more focused, but the last couple of days he's

> been all over the place -- spinning himself around, hand-flapping

> (something I'd never seen him do before yesterday), ear-piercing

> screams and innapropriate laughing; crying with no provocation...I

> really have my hat off to those of you out there who have kids that

> are like this all the time. He's so full of energy, and is doing

> absolutely nothing at he same time (and loudly, I might add).

>

> Right now he's screaming at his Teletubbies video. Apparently Tinky

> Winky is making him mad.

>

I gotta say that I am so happy for you! Sounds like Class A withdrawl

symptoms which means that you are on the right track. Hang in there...there

are many on this list who have gone through pretty severe withdrawl with

their kids and have seen great results.

Best of luck,

M

[Guest guest]

In a message dated 2/18/01 2:15:35 AM Eastern Standard Time, uuitt@...

writes:

>

>

> My 22 month old has started on the GFCF diet (3rd day), and his

> autistic behaviors have escalated. It's driving me nuts. Does this

> happen for some kids like this? Does it mean the diet is working?

>

> Usually he's calmer, more focused, but the last couple of days he's

> been all over the place -- spinning himself around, hand-flapping

> (something I'd never seen him do before yesterday), ear-piercing

> screams and innapropriate laughing; crying with no provocation...I

> really have my hat off to those of you out there who have kids that

> are like this all the time. He's so full of energy, and is doing

> absolutely nothing at he same time (and loudly, I might add).

>

> Right now he's screaming at his Teletubbies video. Apparently Tinky

> Winky is making him mad.

>

I gotta say that I am so happy for you! Sounds like Class A withdrawl

symptoms which means that you are on the right track. Hang in there...there

are many on this list who have gone through pretty severe withdrawl with

their kids and have seen great results.

Best of luck,

M

[Guest guest]

> It is pretty common to have a withdrawal rxn and sometimes even more

> evidence that your child does indeed need this diet. Give ot some

more time

> and most likely things will smooth out again and start on a path of

> improvement. You may also want to look into pphenols and

artificial colors,

> additives (after you get a little more of the GFCF down) as these

too can

> causse similar kinds of rxns in our kids. Common phenol offending

foods:

> bananas, apples , grapes, raisins, often oranges and chocolate.

Just keep

> an eye out for more of rxn after tjese foods. Sounds like you are

on the

> right path to me and I wish you wonderful results on the diet.

Hang in

> there,

Thanks!

I'm curious about the phenols because aside from apple juice, the

other foods you listed are things he really hates... He used to love

bananas, but gets upset if we try to feed them to him these last few

months. Before starting this diet, things were getting to the point

where the only thing he'd eat with gusto was Goldfish crackers, but

he wouldn't drink milk or eat cheese unless it was in a grilled

cheese sandwich (talk about the worst possible combination, huh?).

Anyone care to share how long the withdrawal should last? How did you

deal with it?

An interesting side note. When I say we're new at this, I mean REALLY

new -- we're not in Early Intervention for almost two more weeks, so

we're not in touch with any local support groups or anything like

that. While we were at the grocery store today there was a mother

with a disabled daughter (couldn't really say for sure just what it

was, but her speech was kind of garbled and slow) in one of the

aisles. It was nice because her kid was just being herself, and Phil

was just being himself, swishing his head back and forth going " ahhh!

ahh! ahh! ahhhh! " and for a moment, WE were the typical ones in the

aisle! : )

[Guest guest]

> Withdrawal can vary--few days, to a few weeks. Maybe he avoided

high phenol

> foods becuz they made him feel horrible. Do you have some other

therapies

> lined up for your child?? It is great that you are starting all of

this at

> an early age. I think the therapies are much more effective when

the

> children are on this diet. You have to make it easier for their

minds to

> work and having a healthier mind and body sure make that more

possible. I

> know what you mean about the grocery aisle thing. I have drifted

from my

> " typical " friends and mostly hang out with my " autism moms " as I

now call

> them becuz they think abt what I am thinking abt and are willing to

go thru

> this w/ me. My typical friends didnt really want to know what we

are going

> thru and having to think about the world, the things that have

happened to

> my child etc made them have to think about something besides

Nordstrom

> purses I guess--God forbid. My child didnt have horrible w/

drawal so

> cant help you much there besides encouraging you to hold onto the

fact that

> you are on to something good. Love,

> ----- Original Message -----

I can't say we have anything lined up for him yet, but I want him to

have a fair shot at ABA as well as speech therapy, that's for sure.

Our resources are pretty limited (like -- a lot!), so if we have to

basically become therapists ourselves and administer most of the

program at home we'll do it. I'm hungry for any kind of activity that

will engage the two of us in some way.

We haven't told any of our typical friends yet. A few people at my

office know (the ones who'd need to, and one work friend who is

amazingly supportive -- her daughter got an immune disorder from a

hep vac required for her softball league so she's really interested

in that angle). Our families are 2500 miles away and seem to think

we're just over-reacting. Big time denial. My mother-in-law says

a " lable of mental retardation like autism " will ruin him for life --

" it's worse than bad credit! " she says. My mom told me tonight that

it's not so bad because maybe he'll be happy with the way he is.

They're all meshuggahnah, anyway.

You know, actually, aside form the heartache I've been going through,

there's a strange feeling of relief involved, too. At the very least,

now we can begin to do something to help him. I'm really looking

forward to making friends with some people who'll understand what

it's like, too. What we still are in the dark about is just how

severe his problems are. The doctor admits (after having a " wait and

see " attitude for months!) that he's got some form of autistic

spectrum disorder, but we haven't had him assessed by a psychologist

yet. That comes two days before the Early Intervention people.

> >

Well, it's 12:30 and the guy is going strong. Bedtime was... oh... 4

hours ago...

--

> >

> >

[Guest guest]

My son has been on the diet for almost 2 years (wow).

I remember it being the hardest thing I have ever undertaken in my life (and

I'm an old broad!).

His behaviors got a lot worse for the first 6 weeks, a combination of

withdrawl and mistakes on my part.

But of all the different therapies (both educational and pharmological), the

GF/CF diet has been the biggest contributor to the success of my son's

progress.

Take it one day at time, you'll all do fine!

New York