Re: AAP article on GI symptoms in Autism

[Guest guest]

agirlnamedsuess21,

    Let me start by letting you know that I am a family physician.  While I am

certainly not a neurodevelopmental pediatrician, I sit in an awkward position of

being both a parent of a child with DS-ASD and a medical professional.  I value

this list serve for the simple advice that is shared on parenting our kids.  I

go through the same issues with my son's frustration with communication,

throwing, and playing in his stool.  I share in the same joy when he simply

wants a hug or go for a ride in the dune buggy.  I don't openly advertise my

" M.D. " and I don't want to dispense medical advice.  I come here on this

listserve to typically seek advice.  But I do have a different kind of access to

information and a different perspective than many parents.  And when I feel it

is applicable, I try to share this with the group.  I am not trying to provoke a

point.  The American Academy of Pediatrics article I posted has it's

limitations.  But the reason I posted it is to let you know WHAT your doctor is

being told by their professional organizations.  To let you know WHY your doctor

is generally not supportive of GFCF diets.   I posted, knowing that many on the

listserve disagree with the article.  This is to inform, not to inflame.  If you

have the information, then you are empowered to do something with it. 

    I personally believe that the medical profession does not understand what

they are treating.  But this does not mean I endorse any particular diet.  Just

the simple observation that there is so much that is still not known.  I thank

God for physicians like Dr. Capone, who have taken an interest in our children's

plight and are BEGINNING to shed some light into what is going on in our

children's bodies.

  

    The full text of the article can be downloaded free as a PDF from here: 

http://pediatrics.aappublications.org/cgi/content/abstract/124/2/680

    I don't believe everything I read in the medical literature.  Just as we

should not believe everything we read on the internet.  As parents of disabled

children, we are at risk of being taken advantage of by charlatans, who want to

sell us snake oil with the promise that our children's behavior will improve. 

Anecdotal evidence is simply not enough.  Likewise, there are limitations to the

so called  " scientific method " your doctor was trained to endorse.  The current

process by which scientific papers and new medications are advanced is tainted

by a pharmaceutical industry bent on enhancing profits and physicians own

self-interests which are sometimes politically motivated.  What I have observed

over the years is that as a parent, I am not often as informed as I think I am;

and as a physician, my information is not often as reliable as I am told it is. 

The truth usually lies somewhere in between.  Take for example the recent

British Medical Journal's recanting of Dr Wakefield and the MMR vaccine and

autism.  The question is how did we get to that point of such distrust between

parents and physicians?  It is with some hope for understanding that I post any

medical literature.

    Thanks again everyone for all the wonderful advice.  My wife and I no longer

feel like the only parents who are going insane.  Leotards have kept us from

cleaning up stool from the bedroom walls every morning.  The DS-ASD tats are

great on vacation.  The iPad has been a wonderful " motivator " , now we are

exploring it to supplement PECS.  I can honestly say that this listserve has

encouraged and helped tremendously with improving things for my son and helping

with harmony in the home.  Just goes to show that us docs don't know it all...

Shane Avery

father of , age 11

 

________________________________

To:

Sent: Wed, April 6, 2011 11:18:52 AM

Subject: Re: When Autism became apparent

 

Shane, not sure if these were your personal comments or where they came from,

but the top list is so inaccurate so I had to list (beside in caps and

parentheses only to distinguish and not to yell, by any means, from your posts).

These statements are just so absurd, considering I have done so much reserach

for 7 years into the cause of my son's communication, behavioral and gut issues.

What it all boils down to is there *is* a gut-brain connection. Have you ever

heard the saying: " YOU ARE WHAT YOU EAT. " ?

9Responses below)

P.S. For whatever resons, the GFCF diet does not work for all, but then again,

it is *not* the only ASD Diet that has proven results; it is merely the most

common with the highest percentage of proven results amongst patients.

--->>>

Basically:

> * The incidence of GI symptoms in kids without or with ASD do not differ. (WHO

>SAID THAT? THAT IS SO NOT TRUE. KIDS WITH ASD HAVE MORE TROUBLE DIGESTING AND

>BREAKING DOWN THE PROTEINS FROM GLUTEN AND CASEIN THAN DO NT KIDS. INSTEAD

THEIR

>BODIES FORM PEPTIDES> THIS HAS BEEN PROVEN IN MANY STUDIES>)

> * Kids with ASD do have more trouble with feeding, food selectivity, and

>constipation. (WHO SAYS THIS? SOME KIDS WITH ASD ARE HEFTY EATERS; I HAVE TWO

OF

>THEM. THEY HAVE MORE FOOD INTOLERANCES, THOUGH.)

> * These issues in kids with ASD are likely due to behavioral and communication

>issues, rather than underlying disease process in the gut. (OMG. *WHO* SAYS

>THIS? ALTHOUGH KIDS WITH ASD *DO* HAVE BEHAVIORAL AND COMMUNICATION PROBLEMS,

>THE GUT-BRAIN CONNECTION IS *VERY* REAL AND WHAT ONE EATS DOES AFFECT THEIR

>BRAIN. WHEN I CHANGED MY SON'S DIET, NOT ONLY DD HIS GI SYMPTOMS IMPROVE, BUT

SO

>DID HIS SPEECH AND HIS BEHAVIOR.)

> * The feeling of the AAP paper is that physicians should not encourage

patients

>to apply restrictive diets, vitamins, minerals, or other dietary supplements

>without scientific evidence to back their efficacy. (RESEARCH HAS PROVED THAT

>91% OF THOSE WHO IMPLEMENT THE GFCF HAVE IMPROVEMENTS. WHERE ARE YOU GETTING

>YOUR INFORMATION AGAIN? THERE ARE ONLY TWO THINGS THAT ALL KIDS. INCLUDING ASD

>KIDS HAVE IN COMMON....ONLY TWO....THEY ALL EAT AND THEY ALL BREATHE. DIET,

>INCLUDING CLEAN WATER AND TOLERANT FOODS -INCLUDING NON GMO FOODS- AS WELL AS

>CLEAN AIR HAVE TO BE PART OF THE ANSWER. TO THINK OTHERWISE IS JUST NOT TO

>THINK.)

>

> Shortcomings:

> * This article describes kids with ASD, there may be difference in our DS-ASD

> kids.  My gut impression is that the neurobehavioral issues are only

magnified

>

> with DS-ASD, as our kids have significantly greater issues with communication

> than most kids with simple ASD.  My son simply can not tell me when he has a

> tummy ache.  If it hurts, he likely lashes out with behaviors.  That is the

> whole idea behind the GFCF diet, to treat suspected GI symptoms in order to

> improve the behaviors.  It's hard theory to actually test in a rigorous

> scientific way.

> * Because ASD kids have such limited communication, this study may have

missed

>

> some significant GI symptoms.  This is stated in the paper itself.

> * This is one study population that is 98% white from a single county in the

> U.S., from 1976-1997, and may not be generalizable across everyone.  See my

> first comment under shortcomings.

>

> Shane Avery

> father of

>

[Guest guest]

Dr. Avery! Kudos to you and your family...I can't even imagine how a doctor

must feel when they can't " treat " their family member. It also gives us a

perspective as to what our typical Docs are learning & reading. We are all

part of the group to share, seek advise, and support. I can say that

everyone has something that has or hasn't worked for his/her child..and

whatever works-GOD BLESS..especially since the medical professionals are not

as likely to point out " off-the-cuff " types of interventions, treatments

that they are not familiar with.

Liz

Mom to Tori 11 yrs

ASD/DS/ODD/OCD/GERD and a batch more acronyms...

On Wed, Apr 6, 2011 at 1:08 PM, Shane Avery MD wrote:

>

>

> agirlnamedsuess21,

>

> Let me start by letting you know that I am a family physician. While I

> am

> certainly not a neurodevelopmental pediatrician, I sit in an awkward

> position of

> being both a parent of a child with DS-ASD and a medical professional. I

> value

> this list serve for the simple advice that is shared on parenting our

> kids. I

> go through the same issues with my son's frustration with communication,

> throwing, and playing in his stool. I share in the same joy when he simply

>

> wants a hug or go for a ride in the dune buggy. I don't openly advertise

> my

> " M.D. " and I don't want to dispense medical advice. I come here on this

> listserve to typically seek advice. But I do have a different kind of

> access to

> information and a different perspective than many parents. And when I feel

> it

> is applicable, I try to share this with the group. I am not trying to

> provoke a

> point. The American Academy of Pediatrics article I posted has it's

> limitations. But the reason I posted it is to let you know WHAT your

> doctor is

> being told by their professional organizations. To let you know WHY your

> doctor

> is generally not supportive of GFCF diets. I posted, knowing that many on

> the

> listserve disagree with the article. This is to inform, not to inflame.

> If you

> have the information, then you are empowered to do something with it.

>

> I personally believe that the medical profession does not understand

> what

> they are treating. But this does not mean I endorse any particular diet.

> Just

> the simple observation that there is so much that is still not known. I

> thank

> God for physicians like Dr. Capone, who have taken an interest in our

> children's

> plight and are BEGINNING to shed some light into what is going on in our

> children's bodies.

>

> The full text of the article can be downloaded free as a PDF from

> here:

> http://pediatrics.aappublications.org/cgi/content/abstract/124/2/680

>

> I don't believe everything I read in the medical literature. Just as

> we

> should not believe everything we read on the internet. As parents of

> disabled

> children, we are at risk of being taken advantage of by charlatans, who

> want to

> sell us snake oil with the promise that our children's behavior will

> improve.

> Anecdotal evidence is simply not enough. Likewise, there are limitations

> to the

> so called " scientific method " your doctor was trained to endorse. The

> current

> process by which scientific papers and new medications are advanced is

> tainted

> by a pharmaceutical industry bent on enhancing profits and physicians own

> self-interests which are sometimes politically motivated. What I have

> observed

> over the years is that as a parent, I am not often as informed as I think I

> am;

> and as a physician, my information is not often as reliable as I am told it

> is.

> The truth usually lies somewhere in between. Take for example the recent

> British Medical Journal's recanting of Dr Wakefield and the MMR vaccine and

>

> autism. The question is how did we get to that point of such distrust

> between

> parents and physicians? It is with some hope for understanding that I post

> any

> medical literature.

>

> Thanks again everyone for all the wonderful advice. My wife and I no

> longer

> feel like the only parents who are going insane. Leotards have kept us

> from

> cleaning up stool from the bedroom walls every morning. The DS-ASD tats

> are

> great on vacation. The iPad has been a wonderful " motivator " , now we are

> exploring it to supplement PECS. I can honestly say that this listserve

> has

> encouraged and helped tremendously with improving things for my son and

> helping

> with harmony in the home. Just goes to show that us docs don't know it

> all...

>

> Shane Avery

> father of , age 11

>

>

>

> ________________________________

>

> To:

> Sent: Wed, April 6, 2011 11:18:52 AM

> Subject: Re: When Autism became apparent

>

>

> Shane, not sure if these were your personal comments or where they came

> from,

> but the top list is so inaccurate so I had to list (beside in caps and

> parentheses only to distinguish and not to yell, by any means, from your

> posts).

>

> These statements are just so absurd, considering I have done so much

> reserach

> for 7 years into the cause of my son's communication, behavioral and gut

> issues.

> What it all boils down to is there *is* a gut-brain connection. Have you

> ever

> heard the saying: " YOU ARE WHAT YOU EAT. " ?

> 9Responses below)

> P.S. For whatever resons, the GFCF diet does not work for all, but then

> again,

> it is *not* the only ASD Diet that has proven results; it is merely the

> most

> common with the highest percentage of proven results amongst patients.

> --->>>

> Basically:

> > * The incidence of GI symptoms in kids without or with ASD do not differ.

> (WHO

> >SAID THAT? THAT IS SO NOT TRUE. KIDS WITH ASD HAVE MORE TROUBLE DIGESTING

> AND

> >BREAKING DOWN THE PROTEINS FROM GLUTEN AND CASEIN THAN DO NT KIDS. INSTEAD

> THEIR

> >BODIES FORM PEPTIDES> THIS HAS BEEN PROVEN IN MANY STUDIES>)

> > * Kids with ASD do have more trouble with feeding, food selectivity, and

> >constipation. (WHO SAYS THIS? SOME KIDS WITH ASD ARE HEFTY EATERS; I HAVE

> TWO OF

> >THEM. THEY HAVE MORE FOOD INTOLERANCES, THOUGH.)

> > * These issues in kids with ASD are likely due to behavioral and

> communication

> >issues, rather than underlying disease process in the gut. (OMG. *WHO*

> SAYS

> >THIS? ALTHOUGH KIDS WITH ASD *DO* HAVE BEHAVIORAL AND COMMUNICATION

> PROBLEMS,

> >THE GUT-BRAIN CONNECTION IS *VERY* REAL AND WHAT ONE EATS DOES AFFECT

> THEIR

> >BRAIN. WHEN I CHANGED MY SON'S DIET, NOT ONLY DD HIS GI SYMPTOMS IMPROVE,

> BUT SO

> >DID HIS SPEECH AND HIS BEHAVIOR.)

> > * The feeling of the AAP paper is that physicians should not encourage

> patients

> >to apply restrictive diets, vitamins, minerals, or other dietary

> supplements

> >without scientific evidence to back their efficacy. (RESEARCH HAS PROVED

> THAT

> >91% OF THOSE WHO IMPLEMENT THE GFCF HAVE IMPROVEMENTS. WHERE ARE YOU

> GETTING

> >YOUR INFORMATION AGAIN? THERE ARE ONLY TWO THINGS THAT ALL KIDS. INCLUDING

> ASD

> >KIDS HAVE IN COMMON....ONLY TWO....THEY ALL EAT AND THEY ALL BREATHE.

> DIET,

> >INCLUDING CLEAN WATER AND TOLERANT FOODS -INCLUDING NON GMO FOODS- AS WELL

> AS

> >CLEAN AIR HAVE TO BE PART OF THE ANSWER. TO THINK OTHERWISE IS JUST NOT TO

>

> >THINK.)

> >

> > Shortcomings:

> > * This article describes kids with ASD, there may be difference in our

> DS-ASD

> > kids. My gut impression is that the neurobehavioral issues are only

> magnified

> >

> > with DS-ASD, as our kids have significantly greater issues with

> communication

> > than most kids with simple ASD. My son simply can not tell me when he

> has a

> > tummy ache. If it hurts, he likely lashes out with behaviors. That is

> the

> > whole idea behind the GFCF diet, to treat suspected GI symptoms in order

> to

> > improve the behaviors. It's hard theory to actually test in a rigorous

> > scientific way.

> > * Because ASD kids have such limited communication, this study may have

> missed

> >

> > some significant GI symptoms. This is stated in the paper itself.

> > * This is one study population that is 98% white from a single county in

> the

> > U.S., from 1976-1997, and may not be generalizable across everyone. See

> my

> > first comment under shortcomings.

> >

> > Shane Avery

> > father of

> >

>

>

[Guest guest]

Thank you for such a perfectly succint quote that expresses where we're at as

parents and the medical profession. " What I have observed

over the years is that as a parent, I am not often as informed as I think I am;

and as a physician, my information is not often as reliable as I am told it

is. "  

Sent on the TELUS Mobility network with BlackBerry

Re: When Autism became apparent

 

Shane, not sure if these were your personal comments or where they came from,

but the top list is so inaccurate so I had to list (beside in caps and

parentheses only to distinguish and not to yell, by any means, from your posts).

These statements are just so absurd, considering I have done so much reserach

for 7 years into the cause of my son's communication, behavioral and gut issues.

What it all boils down to is there *is* a gut-brain connection. Have you ever

heard the saying: " YOU ARE WHAT YOU EAT. " ?

9Responses below)

P.S. For whatever resons, the GFCF diet does not work for all, but then again,

it is *not* the only ASD Diet that has proven results; it is merely the most

common with the highest percentage of proven results amongst patients.

--->>>

Basically:

> * The incidence of GI symptoms in kids without or with ASD do not differ. (WHO

>SAID THAT? THAT IS SO NOT TRUE. KIDS WITH ASD HAVE MORE TROUBLE DIGESTING AND

>BREAKING DOWN THE PROTEINS FROM GLUTEN AND CASEIN THAN DO NT KIDS. INSTEAD

THEIR

>BODIES FORM PEPTIDES> THIS HAS BEEN PROVEN IN MANY STUDIES>)

> * Kids with ASD do have more trouble with feeding, food selectivity, and

>constipation. (WHO SAYS THIS? SOME KIDS WITH ASD ARE HEFTY EATERS; I HAVE TWO

OF

>THEM. THEY HAVE MORE FOOD INTOLERANCES, THOUGH.)

> * These issues in kids with ASD are likely due to behavioral and communication

>issues, rather than underlying disease process in the gut. (OMG. *WHO* SAYS

>THIS? ALTHOUGH KIDS WITH ASD *DO* HAVE BEHAVIORAL AND COMMUNICATION PROBLEMS,

>THE GUT-BRAIN CONNECTION IS *VERY* REAL AND WHAT ONE EATS DOES AFFECT THEIR

>BRAIN. WHEN I CHANGED MY SON'S DIET, NOT ONLY DD HIS GI SYMPTOMS IMPROVE, BUT

SO

>DID HIS SPEECH AND HIS BEHAVIOR.)

> * The feeling of the AAP paper is that physicians should not encourage

patients

>to apply restrictive diets, vitamins, minerals, or other dietary supplements

>without scientific evidence to back their efficacy. (RESEARCH HAS PROVED THAT

>91% OF THOSE WHO IMPLEMENT THE GFCF HAVE IMPROVEMENTS. WHERE ARE YOU GETTING

>YOUR INFORMATION AGAIN? THERE ARE ONLY TWO THINGS THAT ALL KIDS. INCLUDING ASD

>KIDS HAVE IN COMMON....ONLY TWO....THEY ALL EAT AND THEY ALL BREATHE. DIET,

>INCLUDING CLEAN WATER AND TOLERANT FOODS -INCLUDING NON GMO FOODS- AS WELL AS

>CLEAN AIR HAVE TO BE PART OF THE ANSWER. TO THINK OTHERWISE IS JUST NOT TO

>THINK.)

>

> Shortcomings:

> * This article describes kids with ASD, there may be difference in our DS-ASD

> kids.  My gut impression is that the neurobehavioral issues are only

magnified

>

> with DS-ASD, as our kids have significantly greater issues with communication

> than most kids with simple ASD.  My son simply can not tell me when he has a

> tummy ache.  If it hurts, he likely lashes out with behaviors.  That is the

> whole idea behind the GFCF diet, to treat suspected GI symptoms in order to

> improve the behaviors.  It's hard theory to actually test in a rigorous

> scientific way.

> * Because ASD kids have such limited communication, this study may have

missed

>

> some significant GI symptoms.  This is stated in the paper itself.

> * This is one study population that is 98% white from a single county in the

> U.S., from 1976-1997, and may not be generalizable across everyone.  See my

> first comment under shortcomings.

>

> Shane Avery

> father of

>

[Guest guest]

Very nice and encouraging and thoughtful post Shane.......thanks....

Annie H.

[Guest guest]

ditto

Charlyne

Subject: RE: AAP article on GI symptoms in Autism

To:

Date: Wednesday, April 6, 2011, 8:02 PM

 

Very nice and encouraging and thoughtful post Shane.......thanks....

Annie H.