Re: Re: diet, Jill please all of this post!!!

[Guest guest]

Marcia

Thank You, Thank You, Thank You,

That is the best description of both the long term and short term goals I have

read in this ten year journey. Connor is up to speed on all academics and is in

absolute control of his act ivies and he has the comprehension to manipulate his

surrounds and enviroment to his benefit. The social problems are the focus at

this point and when he melts I search for what I did wrong, ignoring that

melting down is part of his developmental process.

I wish Rayn all the best and thanks for the encouragement.

Bill

> From: Marcia Hinds <hindssite@...>

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

> klimas_bill@...', , JOSKAT95@...

> Date: Wednesday, August 20, 2008, 2:31 PM

> 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

>

>

>

>

>

>