Re: diet, a review of recent posts, please comment

[Guest guest]

This is much too complex for staff that are already very busy with educating

our children. I have a hard enough time with my family members remembering

what my son can and cannot eat!

A much simpler - and far safer - way is to tell them your child can eat ONLY

items you send from home. Period. My son's schools have had no problem

adhering to this rule. I provide them IN ADVANCE with some special snacks

for the days when they are having celebrations. They keep some in the

freezer for those surprise occasions, or I will provide fresh if I know

ahead of time.

Kristy

diet

>

> Date: Tuesday, August 12, 2008, 11:03 PM

> Thanks for the information on the nids diet.  I had a

> hard time locating it on the webiste, thanks for the links

> in finding it.

> angie

>

>

>

>

>

[Guest guest]

Kristy

I agree and we do send all foods but Connor now ten will be starting genersal ED

classes with a para profeasional and seperate aftercare. In reality my

experience is the wide ranging support group tends to dismiss the diet as a

hassle. When the child insists they give in. Making it hard helps re=enforce the

need to use only what is sent, regardless of my sons demands.

Additionally this outline will help new members get started as they learn the

ins and outs of developing their own program.

>

> > From: angie huiz <angiehuiz@...>

> > Subject: diet

> >

> > Date: Tuesday, August 12, 2008, 11:03 PM

> > Thanks for the information on the nids diet.  I had a

> > hard time locating it on the webiste, thanks for the

> links

> > in finding it.

> > angie

> >

> >

> >

> >

> >

[Guest guest]

*It's my understanding that raw peanuts aren't allowed on the diet and only

some kids can tolerate peanut butter.*

I do agree with Kristy about the complexity of it for the school setting,

but it doesn't hurt to give a copy.

My son is 10 and just started in 4th grade this week. He's been in a

regular classroom with a paraprofessional since 2nd grade- and I had him

repeat 3rd last year- so this is his fourth year to be mainstreamed. It's

worked out well and I have only heard of him trying to eat someone else's

food a few times in all his school days.

At the beginning of each school year I send a note to my son's teacher

stating that he has food allergies and is only to be given food sent from

home unless prior permission is given. (Plus it is in his IEP.) And that

I'm happy to supply treats for parties/special occassions that are safe for

him to eat and that he can share with classmates.

And this year I also noted that he is sensitive to chemicals/perfumes and to

not use cleaning products, perfumes, etc around him.

*I'd be happy to post a copy of the letter if people are interested.*

Also, I list on his medical card for the nurse/office that he is allergic to

dairy products and whole grains. (He's still such a picky eater I don't

need to worry about him trying to eat berries, nuts, candy, etc.)

- in Mobile, AL

______________________________________

" You must write for children in the same way as you do for adults, only

better. " -Maxim Gorky (Aleksey Maksimovich Peshkov)

Reality lies beyond the horizon... Wonderwegian

diet

>

> Date: Tuesday, August 12, 2008, 11:03 PM

> Thanks for the information on the nids diet. I had a

> hard time locating it on the webiste, thanks for the links

> in finding it.

> angie

>

>

>

>

>

[Guest guest]

I would be interested in seeing the letter if it is easy enough for you to

post.  Thanks.

Angie

> From: angie huiz <angiehuiz (DOT) com>

> Subject: diet

> groups (DOT) com

> Date: Tuesday, August 12, 2008, 11:03 PM

> Thanks for the information on the nids diet. I had a

> hard time locating it on the webiste, thanks for the links

> in finding it.

> angie

>

>

>

>

>

[Guest guest]

Thanks Bill for posting the list of foods.  It is helpful along with what is

listed in line.

Angie

>

> > From: angie huiz <angiehuiz (DOT) com>

> > Subject: diet

> > groups (DOT) com

> > Date: Tuesday, August 12, 2008, 11:03 PM

> > Thanks for the information on the nids diet.  I had a

> > hard time locating it on the webiste, thanks for the

> links

> > in finding it.

> > angie

> >

> >

> >

> >

> >

[Guest guest]

Ditto!  Same here - only what we sent.  My son also began to take responsibility

himself for what he could and couldn't eat and could mostly be trusted quite

well.  Lately though, he had chocolate milk at school last year that I didn't

know about - loved it, but got 'busted' because his behavior those nights was

soooo bad I figured it out the 3rd time.  The fact that I could tell convinced

him that yes, his behavior was caused by the milk, and the end result wasn't

worth the few moments of pleasure.  He hadn't really realized he was breaking

his diet because he used to (years ago) be allowed to drink choc rice milk. 

Then he loved it so much he didn't care when I told him it was a no-no - until

he fell apart a few different times and had major consequences.  So in the end,

it still turned out to be a good thing because it reinforced his trust in my

guidance on the diet since he doesn't react so obviously (except then) as he

used to.

HTH-

diet

> groups (DOT) com

> Date: Tuesday, August 12, 2008, 11:03 PM

> Thanks for the information on the nids diet.  I had a

> hard time locating it on the webiste, thanks for the links

> in finding it.

> angie

>

>

>

>

>

[Guest guest]

just to understand, what is the problem with pineapple (besides sugar)

[Guest guest]

So , if we must avoid nuts, CASHEWS are also in the black list?

[Guest guest]

Dear Bill,

Food allergies were difficult for me to deal with before my son was

recovered. For those of you on a gluten free diet, there is a great

cookbook available from the New York Autism Clinic called Surviving the

Gluten-Free Casein-Free Diet with very practical tips to help with this

crazy diet we live with. It can be ordered from the clinic by emailing

autismclinic2@... with a credit card number for fifteen dollars.

You can drive yourself crazy with worrying what you can and cannot feed

them. Some find it so taxing and restrictive that they eventually give up

the diet and even the medical treatments. That is a big mistake. The

medical component is essential to recovery.

Instead, I wish parents would just try to concentrate on eliminating the big

triggers that greatly affect their child's immune systems instead of wasting

hours washing pink dye off the Diflucan tablets. There are only a finite

number of hours in each day and you need to spend your time on the things

that will make the biggest difference for your child instead of sweating the

small stuff.

Each kid is different and you need to do the best you can without making

yourself or your child apprehensive about what they eat. It is important

that your kid not feel totally different and that you do not wake up every

morning (like I did) afraid to feed your child anything because it may cause

a reaction. For most kids with immune problems, the most offending foods

are usually dairy, whole wheat, and milk chocolate. And foods are not the

only allergens that affect our kids. I still use " All Detergent with no

dyes and perfumes " to alleviate some stress on 's immune system.

When I read the list, there are all these food restrictions that were

not there when was growing up. I never worried about tropical fruits

or nuts. We ate Mc's hamburgers, chicken nuggets and French fries

and didn't worry about dairy if it was less than one percent or the last

ingredient on the label. We ordered Tacos from Taco Bell and just took off

the cheese or ordered it very light on the cheese. I ordered Pizza Hut a

lot because we were too busy working with him to cook. One pizza was ordered

without cheese and just toppings. It tasted great that way.

Allergy tests on kids who have immune problems sometimes indicate they are

allergic to everything. They really aren't, it is just that their immune

systems aren't working properly and they react to everything. The goal

should be to strengthen the body by eliminating stress on the immune system.

This means that foods and substances to which the child is highly reactive

are eliminated.

In my opinion, all children with immune issues need an allergy blood test to

determine to which foods they react. In the beginning, I put garlic in

almost everything ate because I thought it fought yeast. What I didn't

realize is that, unlike most children, one of the big triggers for my child

was garlic. It was not until I received the results of his first allergy

test that I saw garlic was one of the things reacted to most. I had

been largely responsible for putting added stress on 's immune system.

A second blood test a few years later had quite different results from the

first one. This time he did not react to much of anything except some

dairy.

I discovered that for it was more about the sugar in the fruits that I

needed to be concerned about. I would limit him to two fruits a day and no

fruit juice. Sugar feeds yeast. Dr. G and I would argue about diet all the

time. He would yell at me that I wasn't being strict enough with 's

diet, and I would say he still needs to be a kid and not feel so different

or be singled out because he couldn't have what the other kids had. Soon I

learned not to share everything on how we did the diet with this great man

who helped us so much. I was always strict with the dairy, but he had a

cookie in his lunch just like the other kids.

When there was a birthday party or a treat at school he had it, but there

was almost no dairy and little sugar at home. Soy was not a problem for

and we were never gluten free. Our meals were never casseroles but

more meat and potatoes, burgers, tacos, spaghetti, chicken patties or

nuggets.

I made sure he exercised in one way or another every day and drank lots of

water. He still does. When he ate an offending food we increased his water

intake and he exercised more. This sped up his system in order to eliminate

the reaction more quickly. For him, exercise was and still is key. He rode

his bike, we took walks, went to the playground, or did something physical

daily.

Whenever he ate something bad we went swimming. Have you ever noticed how

much more focused your kid is after swimming? I don't know why it works,

but it does. Maybe it increases their metabolic rate. I think all our kids

should be in swimming lessons several times a week. (At first we needed

private lessons until he was able to follow directions better and could be

in a class with other kids.)

However, it is not only diet we need to focus on. The food stuff is just a

part of the whole picture and in my opinion we need to concentrate on the

entire kid instead of only what to feed them or what triggers their immune

system. But I need to preface this with the fact that I am not a doctor and

on our visits to Dr. G, there are still concerns and worries by the doctor

about developing diabetes for eating the wrong stuff.

My son is recovered, drives, has a girlfriend, and is in college in a

mechanical engineering program with a 3.8 GPA. We all want our children to

be normal. Although he is careful with his dairy intake, my son does what

you would expect normal college kids to do. And part of normal college

behavior is the occasional pizza and beer. Dr. G cares so much about his

well being. And unfortunately I have accepted that my son's eosinophils

will never be low enough and the diet can never be strict enough for what

Dr. G believes to be best for my child.

Dr G's job is to concentrate on the medical component and for that component

of the program, he is the best. But not all his patients get better even

though their bodies and physical problems are much improved. If you could

wave a magic wand and repair their immune systems, you would still have to

teach them what they missed just like with a stroke victim. If they get the

medical but do not get what is needed to survive in life, it doesn't work.

My son is recovered because I not only did the medical, but included the

educational and behavioral components. If you had told me he would be okay

when he was five, ten, or even fourteen, I never would have believed you.

Most of what I did was so when I had to place him somewhere I wouldn't have

guilt. I could say I did all I could for .

I couldn't afford Dr. Stilton and she wasn't even in the picture back then.

So don't feel guilty or think the world is over if you don't take your child

to Dr. Stilton. You know best what your child needs to learn and can do it

with the help of untrained people or high school kids. You just need

someone with the right temperament; someone who is both assertive and

ignores bad behavior, sets clear limits, and is positively reinforcing for

appropriate behavior.

I did ABA and as could handle it went to a more natural way of

teaching. I trained people to work with him but our family did most of the

work ourselves. We were always working on stuff whether it was pushing a

cart down the grocery aisles or hiring a high school kid to teach him how to

catch a ball or play a board game. I would borrow neighbor kids to help

with teaching social stuff and my neighbors loved the free babysitting I

provided for them.

Helping our kids recover is a full time job and the hardest thing I ever

did. There were many times I didn't think we would make it and sometimes

wanted to just give up.

There was even several times I was so distraught I thought of taking

out and going with him. I didn't think I could face another day of special

diets and working with him 24/7. Fortunately, I couldn't fathom leaving my

older child without a mother. That kept me from doing something stupid.

And as parents what choice do we have? No matter how exhausted and fed up

you are no one will do this for you. You have to keep going because you are

their only hope for a better life.

Before , I didn't understand how important good nutrition is for our

kids; I used to give mine fun fruits for breakfast. I now realize just how

important it is especially in the beginning of this process. But the big

picture also needs to include the behavioral and educational component if

our kids are to have a shot at having a normal or semi normal life.

Marcia Hinds

[Guest guest]

Marcia,

Very nice post. I always wondered what happened to the recovered

children once they grow up. Thank you for letting us know.

Thanks,

>

> Dear Bill,

>

> Food allergies were difficult for me to deal with before my son was

> recovered. For those of you on a gluten free diet, there is a

great

> cookbook available from the New York Autism Clinic called

Surviving the

> Gluten-Free Casein-Free Diet with very practical tips to help with

this

> crazy diet we live with. It can be ordered from the clinic by

emailing

> autismclinic2@... with a credit card number for fifteen dollars.

>

>

>

> You can drive yourself crazy with worrying what you can and cannot

feed

> them. Some find it so taxing and restrictive that they eventually

give up

> the diet and even the medical treatments. That is a big mistake.

The

> medical component is essential to recovery.

>

>

>

> Instead, I wish parents would just try to concentrate on

eliminating the big

> triggers that greatly affect their child's immune systems instead

of wasting

> hours washing pink dye off the Diflucan tablets. There are only a

finite

> number of hours in each day and you need to spend your time on the

things

> that will make the biggest difference for your child instead of

sweating the

> small stuff.

>

>

>

> Each kid is different and you need to do the best you can without

making

> yourself or your child apprehensive about what they eat. It is

important

> that your kid not feel totally different and that you do not wake

up every

> morning (like I did) afraid to feed your child anything because it

may cause

> a reaction. For most kids with immune problems, the most

offending foods

> are usually dairy, whole wheat, and milk chocolate. And foods are

not the

> only allergens that affect our kids. I still use " All Detergent

with no

> dyes and perfumes " to alleviate some stress on 's immune

system.

>

>

>

> When I read the list, there are all these food restrictions

that were

> not there when was growing up. I never worried about

tropical fruits

> or nuts. We ate Mc's hamburgers, chicken nuggets and

French fries

> and didn't worry about dairy if it was less than one percent or

the last

> ingredient on the label. We ordered Tacos from Taco Bell and just

took off

> the cheese or ordered it very light on the cheese. I ordered

Pizza Hut a

> lot because we were too busy working with him to cook. One pizza

was ordered

> without cheese and just toppings. It tasted great that way.

>

>

>

> Allergy tests on kids who have immune problems sometimes indicate

they are

> allergic to everything. They really aren't, it is just that their

immune

> systems aren't working properly and they react to everything. The

goal

> should be to strengthen the body by eliminating stress on the

immune system.

> This means that foods and substances to which the child is highly

reactive

> are eliminated.

>

>

>

> In my opinion, all children with immune issues need an allergy

blood test to

> determine to which foods they react. In the beginning, I put

garlic in

> almost everything ate because I thought it fought yeast.

What I didn't

> realize is that, unlike most children, one of the big triggers for

my child

> was garlic. It was not until I received the results of his first

allergy

> test that I saw garlic was one of the things reacted to

most. I had

> been largely responsible for putting added stress on 's immune

system.

> A second blood test a few years later had quite different results

from the

> first one. This time he did not react to much of anything except

some

> dairy.

>

> I discovered that for it was more about the sugar in the

fruits that I

> needed to be concerned about. I would limit him to two fruits a

day and no

> fruit juice. Sugar feeds yeast. Dr. G and I would argue about

diet all the

> time. He would yell at me that I wasn't being strict enough with

's

> diet, and I would say he still needs to be a kid and not feel so

different

> or be singled out because he couldn't have what the other kids

had. Soon I

> learned not to share everything on how we did the diet with this

great man

> who helped us so much. I was always strict with the dairy, but he

had a

> cookie in his lunch just like the other kids.

>

>

>

> When there was a birthday party or a treat at school he had it,

but there

> was almost no dairy and little sugar at home. Soy was not a

problem for

> and we were never gluten free. Our meals were never

casseroles but

> more meat and potatoes, burgers, tacos, spaghetti, chicken patties

or

> nuggets.

>

>

>

> I made sure he exercised in one way or another every day and drank

lots of

> water. He still does. When he ate an offending food we increased

his water

> intake and he exercised more. This sped up his system in order to

eliminate

> the reaction more quickly. For him, exercise was and still is

key. He rode

> his bike, we took walks, went to the playground, or did something

physical

> daily.

>

>

>

> Whenever he ate something bad we went swimming. Have you ever

noticed how

> much more focused your kid is after swimming? I don't know why it

works,

> but it does. Maybe it increases their metabolic rate. I think

all our kids

> should be in swimming lessons several times a week. (At first we

needed

> private lessons until he was able to follow directions better and

could be

> in a class with other kids.)

>

>

>

> However, it is not only diet we need to focus on. The food stuff

is just a

> part of the whole picture and in my opinion we need to concentrate

on the

> entire kid instead of only what to feed them or what triggers

their immune

> system. But I need to preface this with the fact that I am not a

doctor and

> on our visits to Dr. G, there are still concerns and worries by

the doctor

> about developing diabetes for eating the wrong stuff.

>

>

>

> My son is recovered, drives, has a girlfriend, and is in college

in a

> mechanical engineering program with a 3.8 GPA. We all want our

children to

> be normal. Although he is careful with his dairy intake, my son

does what

> you would expect normal college kids to do. And part of normal

college

> behavior is the occasional pizza and beer. Dr. G cares so much

about his

> well being. And unfortunately I have accepted that my son's

eosinophils

> will never be low enough and the diet can never be strict enough

for what

> Dr. G believes to be best for my child.

>

>

>

> Dr G's job is to concentrate on the medical component and for that

component

> of the program, he is the best. But not all his patients get

better even

> though their bodies and physical problems are much improved. If

you could

> wave a magic wand and repair their immune systems, you would still

have to

> teach them what they missed just like with a stroke victim. If

they get the

> medical but do not get what is needed to survive in life, it

doesn't work.

>

>

>

> My son is recovered because I not only did the medical, but

included the

> educational and behavioral components. If you had told me he

would be okay

> when he was five, ten, or even fourteen, I never would have

believed you.

> Most of what I did was so when I had to place him somewhere I

wouldn't have

> guilt. I could say I did all I could for .

>

>

>

> I couldn't afford Dr. Stilton and she wasn't even in the picture

back then.

> So don't feel guilty or think the world is over if you don't take

your child

> to Dr. Stilton. You know best what your child needs to learn and

can do it

> with the help of untrained people or high school kids. You just

need

> someone with the right temperament; someone who is both assertive

and

> ignores bad behavior, sets clear limits, and is positively

reinforcing for

> appropriate behavior.

>

>

>

> I did ABA and as could handle it went to a more natural way of

> teaching. I trained people to work with him but our family did

most of the

> work ourselves. We were always working on stuff whether it was

pushing a

> cart down the grocery aisles or hiring a high school kid to teach

him how to

> catch a ball or play a board game. I would borrow neighbor kids

to help

> with teaching social stuff and my neighbors loved the free

babysitting I

> provided for them.

>

>

>

> Helping our kids recover is a full time job and the hardest thing

I ever

> did. There were many times I didn't think we would make it and

sometimes

> wanted to just give up.

> There was even several times I was so distraught I thought of

taking

> out and going with him. I didn't think I could face another day

of special

> diets and working with him 24/7. Fortunately, I couldn't fathom

leaving my

> older child without a mother. That kept me from doing something

stupid.

> And as parents what choice do we have? No matter how exhausted

and fed up

> you are no one will do this for you. You have to keep going

because you are

> their only hope for a better life.

>

>

>

> Before , I didn't understand how important good nutrition is

for our

> kids; I used to give mine fun fruits for breakfast. I now realize

just how

> important it is especially in the beginning of this process. But

the big

> picture also needs to include the behavioral and educational

component if

> our kids are to have a shot at having a normal or semi normal life.

>

>

>

> Marcia Hinds

>

>

>

>

>

>

[Guest guest]

Martha and Rhonda,

Things were much improved in about three years but the changes were very

gradual. The way I knew things were better was because of allergy blood

tests I didn't give him the offending foods often. now takes iron a

multivitamin and some prescription drugs; an antiviral, an antifungal and an

SSRI. We took many things along the way but these were the things that

ultimately were important to his recovery.

Hope that helps.

Marcia