New Here, and a few questions...

[Guest guest]

I joined this group a few backs, and have been " lurking " a bit. We

have three kids - Chloe (4 and no problems), Ivan (3 in October - dx

autistic last October) and Giselle (7 months...so far, so good).

I've really questioned myself - should I look into this for Ivan?

Should I try ? Right now Ivan is in an EI program where he

receives 10 hours of ABA a week, and we do a lot more at home. We

just started the gf/cf diet - it seems like he's going through

withdrawls or something, is that normal - and I'm feeling brave and

willing to try this. I'm still nervous.

From what I've seen here, many people have hf autistic or PPD kids

who have made great gains. Ivan is smack-dab in the middle of the

spectrum, and is just starting to attempt language. He babbles a

lot, mimics his older sister, loves to run and play and play with

dolls. I'm still worried, though, that maybe the protocol won't

help him. Has anyone else done this and started with a non-verbal

kid? What was it like?

Ivan certainly has immune system problems. He always reacted to his

vaccines (in retrospect, I shouldn't have continued), culminating in

a severe reaction last year to a DTaP which required medical

intervention. He has eczema and red eyes and seems to always be

running a low-grade fever. His allergist says he's immune-deficient,

but that he'll " grow out of it " . I've not placed to much stock in

this idea, since this doctor also insists that there is no such thing

as Chronic Fatigue Syndrome, or a host of other immune-system

problems.

Ivan's also anemic, and at one point his iron was tested at 8 (not

sure what the unit of measurement is). Does anyone else have a child

with anemia/anemic problems? Does this ring true for anyone else?

I'm babbling now, and it's late. I guess I need some reassurance.

My husband thinks I'll try anything, and of course, I WILL, but I

also have a good vibe about this.

Any info anyone has would be most welcome.

thanks,

[Guest guest]

Hi -

I would be willing to bet MAJOR money that Ivan is a kid! Yes, some

children DO outgrow immune problems, but many don't. There is absolutely

nothing to lose by trying the protocol, and unlike the DAN protocol, there

is nothing about it that could harm your child. Ivan has everything to gain!

Your son is very young - which means he hasn't been sick as long as some other

children on the protocol, and the chance of a full recovery is greater.

We're not doing GF/CF, we are on the " Do's and Don't's " diet on the

website, so I can't answer from personal experience about the " withdrawals " you

are reporting, but I have talked to plenty of parents whose kids are on GF/CF

who say that this is exactly what happens. The foods you have removed from your

child's diet have the same effect as opiates -- and he is addicted to them.

Anytime you are cut off from your addiction, you go through withdrawal. Are you

easing Ivan into the diet or did you just go " cold turkey " ? I've heard that

withdrawal symptoms are less if you go into the diet gradually. I can tell you

that we've had great success on the " Do's and Don'ts " diet with minimal

" withdrawal " symptoms, and it's quite a bit easier to do. It's mostly aimed at

getting allergens out of the diet and greatly reducing the amount of sugars,

which feed yeast. But there are lots of families in this group using GFCF and

having good results, so of course you must do what works for your child.

Anemia, I believe, is caused by iron deficiency, and low iron is definitely

prevalent in children. Dr. G. told us that occasionally he sees a

child with normal iron stores, but rarely. 's iron was 13, and normal is

in the 36-84 range.

I understand your trepidation, but truly, the worst thing that can happen is

that the protocol won't help (but I think it will). Dr. G. is extremely

cautious and takes things one step at a time. Most importantly, he will not

HARM your child. The recovery takes time, but the younger the child, the

better.

This is one parent's opinion...there are parents on this list who have been

here longer can give you lots more info. Good luck!

Donna (mommy to , 4.5)

New Here, and a few questions...

I joined this group a few backs, and have been " lurking " a bit. We

have three kids - Chloe (4 and no problems), Ivan (3 in October - dx

autistic last October) and Giselle (7 months...so far, so good).

I've really questioned myself - should I look into this for Ivan?

Should I try ? Right now Ivan is in an EI program where he

receives 10 hours of ABA a week, and we do a lot more at home. We

just started the gf/cf diet - it seems like he's going through

withdrawls or something, is that normal - and I'm feeling brave and

willing to try this. I'm still nervous.

From what I've seen here, many people have hf autistic or PPD kids

who have made great gains. Ivan is smack-dab in the middle of the

spectrum, and is just starting to attempt language. He babbles a

lot, mimics his older sister, loves to run and play and play with

dolls. I'm still worried, though, that maybe the protocol won't

help him. Has anyone else done this and started with a non-verbal

kid? What was it like?

Ivan certainly has immune system problems. He always reacted to his

vaccines (in retrospect, I shouldn't have continued), culminating in

a severe reaction last year to a DTaP which required medical

intervention. He has eczema and red eyes and seems to always be

running a low-grade fever. His allergist says he's immune-deficient,

but that he'll " grow out of it " . I've not placed to much stock in

this idea, since this doctor also insists that there is no such thing

as Chronic Fatigue Syndrome, or a host of other immune-system

problems.

Ivan's also anemic, and at one point his iron was tested at 8 (not

sure what the unit of measurement is). Does anyone else have a child

with anemia/anemic problems? Does this ring true for anyone else?

I'm babbling now, and it's late. I guess I need some reassurance.

My husband thinks I'll try anything, and of course, I WILL, but I

also have a good vibe about this.

Any info anyone has would be most welcome.

thanks,

[Guest guest]

,

I would say there is not any doubt in my mind that you are discussing .

I have two sons...one that developed symptoms of ASD/OCD added at 7yo, and

one who had CFS. The one with CFS actually became very anemic after he

became ill during his JH years. Our docs were keeping an eye on his levels

and seemed pretty concerned about an early teenage boy being anemic. It was

related to his immune dysfunction.

My younger son suffered from eczema until we began addressing some of his

immune problems at age five. By then it had gotten so bad on his fingers

that he actually lost a fingernail and the skin was peeling off the palms of

his hands.

Although he was always verbal, he was BELOW his age when tested and never

had what I would consider a normal conversation. Until he was five and his

speech cleared up some, most people couldn't understand what he was saying.

What I heard constantly from people was, " What did he say? " The

psychologist who saw him at four, his K teacher and the schools speech

person..all were certain he would qualify for speech therapy. By the time

they tested him we had changed his diet +allergy treatments, and his speech

was no longer garbled. He DIDN'T qualify.

We didn't find out about until he was around nine. Last year at the

age of 12 his testing found him verbally ABOVE his peers. This was without

any speech and language because our school would never agree to doing what

was needed.

Cheryl

>From: " mom2giselle " <aynryan@...>

>Reply-

>

>Subject: New Here, and a few questions...

>Date: Thu, 01 Aug 2002 04:47:42 -0000

>

>I joined this group a few backs, and have been " lurking " a bit. We

>have three kids - Chloe (4 and no problems), Ivan (3 in October - dx

>autistic last October) and Giselle (7 months...so far, so good).

>I've really questioned myself - should I look into this for Ivan?

>Should I try ? Right now Ivan is in an EI program where he

>receives 10 hours of ABA a week, and we do a lot more at home. We

>just started the gf/cf diet - it seems like he's going through

>withdrawls or something, is that normal - and I'm feeling brave and

>willing to try this. I'm still nervous.

>

>From what I've seen here, many people have hf autistic or PPD kids

>who have made great gains. Ivan is smack-dab in the middle of the

>spectrum, and is just starting to attempt language. He babbles a

>lot, mimics his older sister, loves to run and play and play with

>dolls. I'm still worried, though, that maybe the protocol won't

>help him. Has anyone else done this and started with a non-verbal

>kid? What was it like?

>

>Ivan certainly has immune system problems. He always reacted to his

>vaccines (in retrospect, I shouldn't have continued), culminating in

>a severe reaction last year to a DTaP which required medical

>intervention. He has eczema and red eyes and seems to always be

>running a low-grade fever. His allergist says he's immune-deficient,

>but that he'll " grow out of it " . I've not placed to much stock in

>this idea, since this doctor also insists that there is no such thing

>as Chronic Fatigue Syndrome, or a host of other immune-system

>problems.

>

>Ivan's also anemic, and at one point his iron was tested at 8 (not

>sure what the unit of measurement is). Does anyone else have a child

>with anemia/anemic problems? Does this ring true for anyone else?

>

>I'm babbling now, and it's late. I guess I need some reassurance.

>My husband thinks I'll try anything, and of course, I WILL, but I

>also have a good vibe about this.

>

>Any info anyone has would be most welcome.

>

>thanks,

>

>

>

>

>

>Responsibility for the content of this message lies strictly with

>the original author, and is not necessarily endorsed by or the

>opinion of the Research Institute.

>

>

>

[Guest guest]

,

Our 3-year-old son ( protocol for three weeks) also has a very

low iron level. I believe that is somewhat common for kids ...

it sounds like your child would really benefit from ... much

more than dealing with a doctor who doesn't believe in immune system

disorders.

As for you being more keen than your husband about trying this, I

think you've probably got plenty of company in that regard too. My

wife and I are always on-line researching this stuff, talking to

people, attending things ... and the overwhelming majority of the

people we speak to (online or in person) are female. Not sure why.

When I took my son to see Dr. Goldberg (my wife stayed home to look

after our 1 year-old daughter and because we are tight on money) he

looked kind of surprised when he met me and said " usually it's the

Moms I deal with. "

Bottom line is ... go with your instincts about your child. They will

rarely let you down.

Dave

> I joined this group a few backs, and have been " lurking " a bit. We

> have three kids - Chloe (4 and no problems), Ivan (3 in October -

dx

> autistic last October) and Giselle (7 months...so far, so good).

> I've really questioned myself - should I look into this for Ivan?

> Should I try ? Right now Ivan is in an EI program where he

> receives 10 hours of ABA a week, and we do a lot more at home. We

> just started the gf/cf diet - it seems like he's going through

> withdrawls or something, is that normal - and I'm feeling brave and

> willing to try this. I'm still nervous.

>

> From what I've seen here, many people have hf autistic or PPD kids

> who have made great gains. Ivan is smack-dab in the middle of the

> spectrum, and is just starting to attempt language. He babbles a

> lot, mimics his older sister, loves to run and play and play with

> dolls. I'm still worried, though, that maybe the protocol

won't

> help him. Has anyone else done this and started with a non-verbal

> kid? What was it like?

>

> Ivan certainly has immune system problems. He always reacted to

his

> vaccines (in retrospect, I shouldn't have continued), culminating

in

> a severe reaction last year to a DTaP which required medical

> intervention. He has eczema and red eyes and seems to always be

> running a low-grade fever. His allergist says he's immune-

deficient,

> but that he'll " grow out of it " . I've not placed to much stock in

> this idea, since this doctor also insists that there is no such

thing

> as Chronic Fatigue Syndrome, or a host of other immune-system

> problems.

>

> Ivan's also anemic, and at one point his iron was tested at 8 (not

> sure what the unit of measurement is). Does anyone else have a

child

> with anemia/anemic problems? Does this ring true for anyone else?

>

> I'm babbling now, and it's late. I guess I need some reassurance.

> My husband thinks I'll try anything, and of course, I WILL, but I

> also have a good vibe about this.

>

> Any info anyone has would be most welcome.

>

> thanks,

>

>

[Guest guest]

donna, is it true that dr. g approaches the glutein

restriction differently in that he allows a white

bread with not milk or sugars? i've been on gf/cf for

2 years with my kids and i would love to be able to

offer them some homemade white bread fitting that

description. anyone have any experience with being on

strict gf and then going to this? barb ---

Donnaaron <donnaaron@...> wrote:

> Hi -

>

> I would be willing to bet MAJOR money that Ivan is a

> kid! Yes, some children DO outgrow immune

> problems, but many don't. There is absolutely

> nothing to lose by trying the protocol, and

> unlike the DAN protocol, there is nothing about it

> that could harm your child. Ivan has everything to

> gain!

>

> Your son is very young - which means he hasn't been

> sick as long as some other children on the protocol,

> and the chance of a full recovery is greater.

>

> We're not doing GF/CF, we are on the " Do's and

> Don't's " diet on the website, so I can't answer

> from personal experience about the " withdrawals " you

> are reporting, but I have talked to plenty of

> parents whose kids are on GF/CF who say that this is

> exactly what happens. The foods you have removed

> from your child's diet have the same effect as

> opiates -- and he is addicted to them. Anytime you

> are cut off from your addiction, you go through

> withdrawal. Are you easing Ivan into the diet or

> did you just go " cold turkey " ? I've heard that

> withdrawal symptoms are less if you go into the diet

> gradually. I can tell you that we've had great

> success on the " Do's and Don'ts " diet with minimal

> " withdrawal " symptoms, and it's quite a bit easier

> to do. It's mostly aimed at getting allergens out

> of the diet and greatly reducing the amount of

> sugars, which feed yeast. But there are lots of

> families in this group using GFCF and having good

> results, so of course you must do what works for

> your child.

>

> Anemia, I believe, is caused by iron deficiency, and

> low iron is definitely prevalent in children.

> Dr. G. told us that occasionally he sees a

> child with normal iron stores, but rarely. 's

> iron was 13, and normal is in the 36-84 range.

>

> I understand your trepidation, but truly, the worst

> thing that can happen is that the protocol won't

> help (but I think it will). Dr. G. is extremely

> cautious and takes things one step at a time. Most

> importantly, he will not HARM your child. The

> recovery takes time, but the younger the child, the

> better.

>

> This is one parent's opinion...there are

> parents on this list who have been here longer can

> give you lots more info. Good luck!

> Donna (mommy to , 4.5)

>

>

> New Here, and a few questions...

>

>

> I joined this group a few backs, and have been

> " lurking " a bit. We

> have three kids - Chloe (4 and no problems), Ivan

> (3 in October - dx

> autistic last October) and Giselle (7 months...so

> far, so good).

> I've really questioned myself - should I look into

> this for Ivan?

> Should I try ? Right now Ivan is in an EI

> program where he

> receives 10 hours of ABA a week, and we do a lot

> more at home. We

> just started the gf/cf diet - it seems like he's

> going through

> withdrawls or something, is that normal - and I'm

> feeling brave and

> willing to try this. I'm still nervous.

>

> From what I've seen here, many people have hf

> autistic or PPD kids

> who have made great gains. Ivan is smack-dab in

> the middle of the

> spectrum, and is just starting to attempt

> language. He babbles a

> lot, mimics his older sister, loves to run and

> play and play with

> dolls. I'm still worried, though, that maybe the

> protocol won't

> help him. Has anyone else done this and started

> with a non-verbal

> kid? What was it like?

>

> Ivan certainly has immune system problems. He

> always reacted to his

> vaccines (in retrospect, I shouldn't have

> continued), culminating in

> a severe reaction last year to a DTaP which

> required medical

> intervention. He has eczema and red eyes and

> seems to always be

> running a low-grade fever. His allergist says

> he's immune-deficient,

> but that he'll " grow out of it " . I've not placed

> to much stock in

> this idea, since this doctor also insists that

> there is no such thing

> as Chronic Fatigue Syndrome, or a host of other

> immune-system

> problems.

>

> Ivan's also anemic, and at one point his iron was

> tested at 8 (not

> sure what the unit of measurement is). Does

> anyone else have a child

> with anemia/anemic problems? Does this ring true

> for anyone else?

>

> I'm babbling now, and it's late. I guess I need

> some reassurance.

> My husband thinks I'll try anything, and of

> course, I WILL, but I

> also have a good vibe about this.

>

> Any info anyone has would be most welcome.

>

> thanks,

>

>

>

>

>

[Guest guest]

Barb,

Check out " The Do's and Don'ts of Diet on Dr. G's website... here's the

link.

http://www.neuroimmunedr.com/Articles/Autism___PDD/diet.pdf

Caroline

>On 8/1/02 4:00 PM, " Barb Katsaros " <barbkatsaros@...> wrote:

> donna, is it true that dr. g approaches the glutein

> restriction differently in that he allows a white

> bread with not milk or sugars? i've been on gf/cf for

> 2 years with my kids and i would love to be able to

> offer them some homemade white bread fitting that

> description. anyone have any experience with being on

> strict gf and then going to this? barb ---

> Donnaaron <donnaaron@...> wrote: