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

August 17, 2008

We had a huge reaction. My wife started a Nutri systems diet and she introduced

Pineapple for the first time at ten, He loved it. We went through an entire

month of rages and violent behavior and finally ID'ed pineapple as the culprit

*Small infrequent servings " . It took a week after we stopped but all the

behavior went away! with no other changes.

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

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

August 17, 2008

It's not just pineapple; it's all tropical fruits. As with whole grains, the

body may have a more difficult time breaking down these foods. Dr. G says the

most allergenic foods tend to be whole grains ,casein, nuts, berries and

tropical fruits. My son craves what he is allergic too. Pineapple is his

favorite fruit; I was shocked to find out how sensitive he is to it. I've also

read on the enzyme list that a lot of kids can't tolerate the enzymes with

papain and bromelain (pls excuse the spelling); both are enzymes found in

abundance in tropical fruit and usually associated with hyperactivity,

emotionalism and sometimes aggression.

Robyn

From: Bill klimas <klimas_bill@...>

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

Date: Sunday, August 17, 2008, 4:45 PM

We had a huge reaction. My wife started a Nutri systems diet and she introduced

Pineapple for the first time at ten, He loved it. We went through an entire

month of rages and violent behavior and finally ID'ed pineapple as the culprit

*Small infrequent servings " . It took a week after we stopped but all the

behavior went away! with no other changes.

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

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

August 18, 2008

This is the reason for my post. I understand that all of our kids are diffferent

but the food issues have a common thread. I have seen on the list that several

parents have removed " Nuts " but has anyone asked Dr G or have had adverse

reactions from Cashews in particular. The idea is to develope a well defined

list of " specific " foods to avoid based on all of our common knowledge.

I just went through a melt down and the only item that may have caused it is soy

milk or being in a tropical storm/hurricane, on a day that was supposed to be

the first day of school. I understand that some of the list kids can not

tolerate soy but how many recovered kids toterated soy durung recovery?

Please let me know if soy is definitively not a problem for any successfully

recovered kids.

Bill

> From: ia Azañedo <vanessagamarrac1@...>

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

>

> Date: Monday, August 18, 2008, 5:25 PM

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

> list?

>

August 18, 2008

My son had a reaction on the food allergy panel test to peanuts. Dr. G said it

was better to let him have refined, processed peanut butter than to substitute

another nut butter. My son's reaction to peanut butter seems to be confined to

eczema, so originally we took him off it completely. After about a six weeks, we

began to introduce it back into his diet and he eats it on a rotation basis no

more than twice a week and then only about about a tablespoon. This works for

him and the eczema hasn't returned.

HTH,

Robyn

> From: ia Azañedo <vanessagamarrac1>

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

> groups (DOT) com

> Date: Monday, August 18, 2008, 5:25 PM

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

> list?

>

August 18, 2008

Hi Bill

I can't call my oldest son recovered, but he is doing very well despite being

off the protocol now for 2 1/2? years or more. He would become severely

aggressive and had the worst meltdowns after exposure to soy protein (soybean

oil has always been ok), especially soy lecithen. In him, I think it took a few

exposures in a week's time to really build up to where he went completely pscyho

out-of-control (eyes mildly dilated - mildly that a dr wouldn't call them so,

but you can tell they're bigger). It would take 5 days off the soy protein to

see the bad effects fully go away. In those days, he rated on the CARS smack in

the middle of moderate to severe even though he was already rapidly improving.

His eosiniphils didn't usually show allergy, but he was very behaviorally

reactive anyway. His food panel was low and not showing a super reactive kid -

just the typical mild elevations in egg and some dairy that just about anyone

could have. But soy still made him psycho, and it would reach a point sometimes

where - when it finally dawned on me he was being exposed and I had missed it -

I'd tear up the cabinets looking for what he was getting that had soy lecithen.

Not once did I not find that a culprit had been added in the last month and I

had somehow missed it.

Now he can have it. While I wouldn't exactly give him soy milk every day (he'd

never drink that nasty stuff anyway lol), he really loves some cookies that have

soy lecithen, but he was eating them often. We went thru a spell where he was

aggressive, but he had gotten them up to getting them daily (I lose my grips on

the sugar and have to pull back when habits develop and I didn't notice what

I've done). I backed them to 3x a week, and everything was fine. I still

couldn't tell you if the soy was actually the problem this time like in the past

- his pupils didn't really " do that thing " . It could have been just yeast,

because since restarting an antifungal, ALMOST ALL of his irritability is GONE

(I'm still gasping in shock), and this was one irritable kid lately. And he has

had something with soy lecithen in it every day often twice for the entire 2

weeks he has been on the antifungal.

His eosiniphils were up at the time he got his antifungal, though, but he was

getting some dairy, but even then - I could be in denial - I won't know right

away if it was food - I want to wait till the next lab. That's because I

suspect yeast could be raising his - really. Elevated eos's once prompted me to

ask to change an antifungal a couple of months early in the past 'cause his diet

was so clean and his eos's went up, and Dr G humored me and they immediately

shot back down and didn't rise again.

So even though you wouldn't call my son 100% recovered - he is diagnosed

Asperger now - but is so mild in comparison to the other children I see where I

work. He still lags socially although the neighborhood boys are suddenly coming

over and hanging out - much to my shock, and he's interacting casually and

comfortably with them even though they roll their eyes at him once in a while

and then keep on playing. His unusual thoughts resulting in

unusual 'conversation' (talking my head off about 'what if's) are diminishing

on antifungals, which I'm really shocked about. Where I see him right now blows

my mind and I have hope for the future - social is always the last to come

around. And right now while on antifungals, he's one happy kid (in the last 2

weeks - we'll see how that hangs on).

That was my really long winded round about too much information way of saying

that I think as kids recover, many have the chance to begin tolerating soy.

lol. And I tell my husband HE gives too much detail. I ought to delete 2/3s

of that but oh well.

HTH-

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

> groups (DOT) com

> Date: Monday, August 18, 2008, 5:25 PM

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

> list?

>

August 18, 2008

Dr. G isn't a fan of many nuts because of the arginine content in

most nuts. Peanuts are OK but that's about it.

Cheryl

~Visit my webstore for anything you need related to autism -

groceries, supps, therapy supplies, books, and more!

http://astore.amazon.com/grystai-20

~Check out my blog: http://www.gryffins-tail.blogspot.com/

On Aug 18, 2008, at 4:31 PM, Bill klimas wrote:

> This is the reason for my post. I understand that all of our kids

> are diffferent but the food issues have a common thread. I have

> seen on the list that several parents have removed " Nuts " but has

> anyone asked Dr G or have had adverse reactions from Cashews in

> particular. The idea is to develope a well defined list of

> " specific " foods to avoid based on all of our common knowledge.

>

> I just went through a melt down and the only item that may have

> caused it is soy milk or being in a tropical storm/hurricane, on a

> day that was supposed to be the first day of school. I understand

> that some of the list kids can not tolerate soy but how many

> recovered kids toterated soy durung recovery?

>

> Please let me know if soy is definitively not a problem for any

> successfully recovered kids.

> Bill

>

>> From: ia Azañedo <vanessagamarrac1@...>

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

>>

>> Date: Monday, August 18, 2008, 5:25 PM

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

>> list?

>>

August 18, 2008

My son tested high for nuts but Dr G said I can give him processed

peanut butter like skippy and I do with no ill effects. Jerri

>

> Dr. G isn't a fan of many nuts because of the arginine content in

> most nuts. Peanuts are OK but that's about it.

>

> Cheryl

>

> ~Visit my webstore for anything you need related to autism -

> groceries, supps, therapy supplies, books, and more!

> http://astore.amazon.com/grystai-20 <http://astore.amazon.com/grystai-20>

>

> ~Check out my blog: http://www.gryffins-tail.blogspot.com/

> <http://www.gryffins-tail.blogspot.com/>

>

> On Aug 18, 2008, at 4:31 PM, Bill klimas wrote:

>

> > This is the reason for my post. I understand that all of our kids

> > are diffferent but the food issues have a common thread. I have

> > seen on the list that several parents have removed " Nuts " but has

> > anyone asked Dr G or have had adverse reactions from Cashews in

> > particular. The idea is to develope a well defined list of

> > " specific " foods to avoid based on all of our common knowledge.

> >

> > I just went through a melt down and the only item that may have

> > caused it is soy milk or being in a tropical storm/hurricane, on a

> > day that was supposed to be the first day of school. I understand

> > that some of the list kids can not tolerate soy but how many

> > recovered kids toterated soy durung recovery?

> >

> > Please let me know if soy is definitively not a problem for any

> > successfully recovered kids.

> > Bill

> >

> >> From: ia Azañedo <vanessagamarrac1@...

> <mailto:vanessagamarrac1%40>>

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

> >> <mailto:%40>

> >> Date: Monday, August 18, 2008, 5:25 PM

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

> >> list?

> >>

August 18, 2008

Oops I meant tested high for peanuts!

>

> My son tested high for nuts but Dr G said I can give him processed

> peanut butter like skippy and I do with no ill effects. Jerri

> >

> > Dr. G isn't a fan of many nuts because of the arginine content in

> > most nuts. Peanuts are OK but that's about it.

> >

> > Cheryl

> >

> > ~Visit my webstore for anything you need related to autism -

> > groceries, supps, therapy supplies, books, and more!

> > http://astore.amazon.com/grystai-20

> <http://astore.amazon.com/grystai-20>

> <http://astore.amazon.com/grystai-20

> <http://astore.amazon.com/grystai-20>>

> >

> > ~Check out my blog: http://www.gryffins-tail.blogspot.com/

> <http://www.gryffins-tail.blogspot.com/>

> > <http://www.gryffins-tail.blogspot.com/

> <http://www.gryffins-tail.blogspot.com/>>

> >

> > On Aug 18, 2008, at 4:31 PM, Bill klimas wrote:

> >

> > > This is the reason for my post. I understand that all of our kids

> > > are diffferent but the food issues have a common thread. I have

> > > seen on the list that several parents have removed " Nuts " but has

> > > anyone asked Dr G or have had adverse reactions from Cashews in

> > > particular. The idea is to develope a well defined list of

> > > " specific " foods to avoid based on all of our common knowledge.

> > >

> > > I just went through a melt down and the only item that may have

> > > caused it is soy milk or being in a tropical storm/hurricane, on a

> > > day that was supposed to be the first day of school. I understand

> > > that some of the list kids can not tolerate soy but how many

> > > recovered kids toterated soy durung recovery?

> > >

> > > Please let me know if soy is definitively not a problem for any

> > > successfully recovered kids.

> > > Bill

> > >

> > >> From: ia Azañedo <vanessagamarrac1@...

> <mailto:vanessagamarrac1%40>

> > <mailto:vanessagamarrac1%40>>

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

> > >> <mailto:%40>

> <mailto:%40>

> > >> Date: Monday, August 18, 2008, 5:25 PM

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

> > >> list?

> > >>

August 19, 2008

My experience with my son and peanut butter was that I was giving him peanut

butter from the HFS, but he had a rash on his elbows (not eczema). I

switched him to Jif and the rash vanished and has not reappeared.

Kristy

From: [mailto: ] On Behalf Of Robyn

& Greg Coggins

Sent: Monday, August 18, 2008 5:31 PM

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

My son had a reaction on the food allergy panel test to peanuts. Dr. G said

it was better to let him have refined, processed peanut butter than to

substitute another nut butter. My son's reaction to peanut butter seems to

be confined to eczema, so originally we took him off it completely. After

about a six weeks, we began to introduce it back into his diet and he eats

it on a rotation basis no more than twice a week and then only about about a

tablespoon. This works for him and the eczema hasn't returned.

HTH,

Robyn

> From: ia Azañedo <vanessagamarrac1>

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

> groups (DOT) com

> Date: Monday, August 18, 2008, 5:25 PM

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

> list?

>

August 19, 2008

,

Thanks. Lomg winded is what I needed. The mild to mid allergy panels is what I

am dealing with and in that this is the first week of general ed I have ridden

the diet to the n'th degree. I am ay a loss as to the melt down. Question: How

much soy set him off? Was it a very small amount?

Bill

>

> > From: ia Azañedo <vanessagamarrac1@

> >

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

> please comment

> > groups (DOT) com

> > Date: Monday, August 18, 2008, 5:25 PM

> > So , if we must avoid nuts, CASHEWS are also in the

> black

> > list?

> >

August 19, 2008

Hey Bill -

For my son, 'back when', it tended to need to build up in his system before he

got to the point where he started completely losing it. But soy licithen in

packaged foods isn't usually that huge of an amount. 3 cookies with soy

lecithen in it was enough to make him come apart. Now, he can eat them w/no

problem. BUT he hasn't drank soy milk since I first tried it, so I don't know

what kind of protein that has and how it's different from the lecithen. (BTW -

eggs have a kind of lecithen I think too, but it's not a problem).

Honestly, sometimes I can't pinpoint causes of meltdowns, and as long as they

don't occur again repeatedly, maybe it's ok? I always chart the foods over the

last couple of days when it happens in order to prepare for the next time (you'd

lol if you knew how dysfunctional my memory is, though).

The other typical cause of my son having a major meltdown is the onset of a

bacterial illness - usually strep. My second gets cranky before signs of a

sinus infection (he's not an explosive kid, he's just CFIDS and now I'm gonna

add ADD). Strep is the single most cause of unmanageable nuclear meltdowns in

our house. But we had two this year that had me rushing to get a strep test and

it wasn't strep but it was *something*, and antibiotics cleared him up even

though we never figured out what. It starts 3 days prior to when he would test

positive for strep - if I were to take him any earlier, it would be negative.

(It took me a few times to figure that out).

Sorry - none of these are really answers - just my interpretation of

our experience. I think my interpretation can change from day to day too! lol

And I can't imagine how many times I blamed a food or illness when it could

have just as easily been a tone of voice from one of us (parents), his brother

irritating him till he broke down, a bad day in school where he kept himself

together until he got home and exploded where it was safe to, or how he'd go

thru a bad period right before the sun came out and all became well again

despite no changes.

I think the symbol of the puzzle for autism is so appropriate. Anyway, now that

school has started back here, there are tons of sick kids in the doctor's

offices here in Alabama.

HTH-

Re: diet, a review of recent posts,

> please comment

> > groups (DOT) com

> > Date: Monday, August 18, 2008, 5:25 PM

> > So , if we must avoid nuts, CASHEWS are also in the

> black

> > list?

> >

August 19, 2008

No Kidding! And I LOVE that health food store peanut butter. I stayed very ill

as a kid until that healthfood store closed - or maybe we moved away.

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

> groups (DOT) com

> Date: Monday, August 18, 2008, 5:25 PM

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

> list?

>

August 20, 2008

God Bless you Marcia. Your posts always keep me hanging in here. Jerri

>

> 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@... <mailto:autismclinic2%40verizon.net> 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

>

August 20, 2008

Thank You Marcia....just when I feel ready to give up, I read one of your posts

and it gives me hope that one day too, my son (12) will be recovered. Diet is

always an issue in my house and I am constantly getting ridiculed for not

feeding my son food that we all eat. I am so tired of explaining the reasons why

I give my son different food. My horns seem to come out when have to explain the

reason I do the things that I do for Danny. Anyhow, thanks again! It is nice to

know that we are not alone with our children! (:

From: Marcia Hinds <hindssite@...>

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

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

Date: Wednesday, August 20, 2008, 11:31 AM

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@ verizon.net 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

August 20, 2008

Dear Marcia,

What a GODSEND you are for me today!!! I'm going to print out your

letter for reference! I'm sure I'll read it many, many times!

THANK YOU!!

*Can you tell me what meds you used, what they were for and how they helped?

Rhonda

www.RhondaSpellman.com

Marcia Hinds wrote:

>

> 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@... <mailto:autismclinic2%40verizon.net> 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

>

August 20, 2008

Marcia,

Thank You! What an encouragement this is. The diet has so stressed me out

and I feel my little guy is always hungry! I have definitely experienced

daily the fear of what to feed him. And I have found him more than a few

times sneaking fruit. Now all tempting foods are under lock and key. His

food panel measures many more foods in the significant range than we

expected. Dr. G says not to worry as it is used as an indicator of how " off "

his immune system is.

How long did it take to " cool off " 's immune system with the special

diet?

Since being on Valtrex, ketaconazole, and Paxil I truly believe the " fog "

has lifted and we can more effectively rehabilitate with ABA etc. Did your

son happen to have speech apraxia, too? We have been told that our boy has

this and to really put an emphasis on speech therapy.

Thanks again,

Martha

From: [mailto: ] On Behalf Of Marcia

Hinds

Sent: Wednesday, August 20, 2008 1:32 PM

klimas_bill@...'; ; JOSKAT95@...

Subject: [sPAM] Re: diet, a review of recent posts, please comment

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@... <mailto:autismclinic2%40verizon.net> with a

credit card number for fifteen dollars.