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HARVARD UNIVERSITY AND MASSACHUSETTS GENERAL HOSPITAL are

collaborating on a study to establish a medical protocol for the

treatment of autism. They have already made significant medical

observations in treating over 600 children with autism.

Even though autism has reached epidemic proportions, affecting more

than 600,000 children in this country and millions of children

worldwide, the medical community lacks the scientific data necessary

to medically treat these children.

Without this research or similar research, autism will continue to be

viewed and treated as just a neurological dysfunction. Tragically,

its victims will continue to suffer, untreated, with severe,

biological illnesses.

The Harvard-Mass General study is remarkably the first major study

being conducted to establish a medical basis for the treatment of

autism.

Twenty years ago, doctors considered autism an " untreatable

condition. " In many cases a diagnosis of autism ultimately sentenced

a child to an asylum.

According to Time Magazine, May 6, 2002, " the latest studies,

(however), suggest that as many as 1 in 150 kids age 10 and younger

may be affected by autism or a related disorder. " The problem of the

rising rate of autism is compounded by the lack of knowledgeable

medical treatment.

The dilemma for physicians is not having a medical care protocol

based on valid research data to treat autism. Doctors are also faced

with a group of children from whom it is very difficult to obtain a

description of what is wrong with them. Many autistic children are

nonverbal and have behavioral problems so that the physician cannot

trust their response. Unless a treatment protocol is developed, many

of these children will live with painful, undiagnosed medical

conditions that will grow more serious as they become teenagers and

adults.

The success of the Harvard-Mass General study holds out hope to

millions of children with autism of receiving the standard of medical

care that they need.

The Harvard-Mass General researchers have already had significant

findings.

Dr. Tim Buie, a pediatric gastroenterologist from Harvard Mass

General, has performed more than 500 gastrointestinal endoscopies

with biopsies on autistic children. His findings show that more than

half of these children had treatable gastrointestinal problems that

ranged from moderate to severe including esophagitis, gastritis and

enterocolitis along with the presence of lymphoid nodular

hyperplasia.

In a recent conference Buie echoed the opinion of a growing number of

clinical researchers and practitioners treating autistic

patients. " These children are ill, in distress and pain, and not just

mentally, neurologically dysfunctional, " he said.

After diagnosis, Dr. Buie has successfully treated his patients by

replacing suspected enzyme and probiotic deficiencies. The results

have been significant improvements in his patients' conditions.

Left untreated these gastrointestinal problems would further

complicate neurological problems and exacerbate physical problems and

other symptoms of autism.

In a significant conclusion, Dr. Buie believes that many of the

symptoms of autism such as self abusive behavior including self-

mutilation, head-banging, unexplained outbursts, atypical sleep

patterns, disrupted sleep or night awakenings, are actually symptoms

of pain that a child is not able to communicate.

The Harvard research team presented their research proposal to the

Northwest Autism Foundation and a select group of doctors and

scientists in Portland last fall. A summary of their proposal

accompanies this presentation.

The Harvard team of researchers including Dr. Harlan Winter, Dr.

Rafail Kushak and Dr. Buie are committed to providing the scientific

evidence needed to establish gastrointestinal findings and develop

successful methods of treatment. This research will be used to

establish a basis for the treatment of autistic children at various

medical centers.

An important component of the Harvard-Mass General proposal is to

establish a network of " centers of excellence " at medical

universities to treat autistic children.

The centers will define and follow a standard of care. They also

envision that the centers will be linked in a consortium that will

collect data and statistical correlations. The collective database

that will develop will become the basis for clinical treatment

protocols for autism.

The Northwest Autism Foundation supports the Harvard – Mass General

Study. We propose that the necessary research be funded to complete

this project. The researchers are seeking less than $500,000 to

continue their scientific work to completion.

The cost to the country of an untreated child with autism for

education and social services is over $2 million plus the untold

agony and frustration of a devastated family. An investment of less

than $500,000 to begin a solution with the Harvard-Mass General Study

is an opportunity that should not be missed.

Initial Autism Research Findings at Harvard - Massachusetts General

Research Experience:

Over 400 patients evaluated

Ages 14 Months to 20 Years

3:1 ratio of male:female patients

Patients undergoing endoscopic procedure all had GI symptoms of pain

or diarrhea

Endoscopy Findings:

Esophagitis in 23 out of 111 (20%)

Gastritis in 14 out of 111 (12%); 4 had Helicobacter pylori

Duodenitis in 11 out of 111 (10%); 2 had Celiac Sprue (According to

Dr. Buie, all children with ASD should get a blood test for Celiac

Sprue before going on a GF diet. Once they're on the diet, those

antibodies are gone.)

Eosinophilic Inflammation in 5 out of 111 (5%)

Pancreatic Function Testing:

Duodenal collection of pancreatic enzymes

10 out of 90 (11%) had low enzyme activity (This is a very high

finding among general population.)

2 out of these 10 (20%) had total pancreatic insufficiency, 5 with

multiple enzyme defects

Carbohydrate Digestion:

Lactase deficiency was found in 55% of ASD children tested

Combined deficiency of disacchraridase enzymes was found in 15%

Enzyme assays correlate well with hydrogen breath tests

Colonoscopy Findings:

Colitis was found in 11 of 89 patients (12%), none with features of

Ulcerative Colitis or Crohn's

Histologic (biopsy reviewed) lymphoid nodular hyperplasia was found

in 15 of 89 patients (16%)

Eosinophilic inflammation was found in 13 of 89 patients (14%); cause

or significance is unclear

Neurotransmitters:

Neurotransmitters are products which stimulate nerve activity

A recent study showed elevation of several neurotransmitters in

children with autism. These children were identified as autistic at

age 15 years; the abnormal neurotransmitters were already present at

birth on the heel stick blood screen.

Every single neurotransmitter found in the brain is also found in the

gastrointestinal tract.

Mass General Hospital has begun to analyze rectal biopsy specimens

for neurotransmitter abnormalities.

Well-established normals are still being clarified.

So far, 2 patients with profound constipation have shown a deficiency

of 2 essential neurotransmitters that regulate motility.

Conclusions:

Autistic children commonly have GI symptoms.

All experience published so far is a laundry list of observational

data.

The brain –gut connection in autism remains to be understood.

Evidence-based studies are necessary in order to delineate these

associations.

Recommendations

We must pay attention not only to the intestinal complaints of these

children, but consider behaviors and actions as potential symptoms.

We have to educate more than the families about GI issues; we must

educate the professional community and involve them in the process of

caring for these children.

Summary: Purpose of this Proposal

To learn about the gastrointestinal function of children with autism

and determine if relationships exist between digestion, allergy,

motility, and behavior.

Contacts

Harvard Medical School/Massachusetts General Hospital

à Buie, MD

à Harland Winter, MD

à Rafail Kushak, MD

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Can anyone tell me if Buie has looked at the presence of measles

virus in the biopsies he has taken? He has confirmed the existence

of lymphoid nodular hyperplasia (LNH) but never stated anything

about MMR. I know that most likely took considerable

heat when he reported that all of his LNH biopsies contained measles

(vaccinia) virus so Buie may be cautious in revealing

such " unpopular " findings...

>

> HARVARD UNIVERSITY AND MASSACHUSETTS GENERAL HOSPITAL are

> collaborating on a study to establish a medical protocol for the

> treatment of autism. They have already made significant medical

> observations in treating over 600 children with autism.

>

> Even though autism has reached epidemic proportions, affecting

more

> than 600,000 children in this country and millions of children

> worldwide, the medical community lacks the scientific data

necessary

> to medically treat these children.

>

> Without this research or similar research, autism will continue to

be

> viewed and treated as just a neurological dysfunction. Tragically,

> its victims will continue to suffer, untreated, with severe,

> biological illnesses.

>

> The Harvard-Mass General study is remarkably the first major study

> being conducted to establish a medical basis for the treatment of

> autism.

>

> Twenty years ago, doctors considered autism an " untreatable

> condition. " In many cases a diagnosis of autism ultimately

sentenced

> a child to an asylum.

>

> According to Time Magazine, May 6, 2002, " the latest studies,

> (however), suggest that as many as 1 in 150 kids age 10 and

younger

> may be affected by autism or a related disorder. " The problem of

the

> rising rate of autism is compounded by the lack of knowledgeable

> medical treatment.

>

> The dilemma for physicians is not having a medical care protocol

> based on valid research data to treat autism. Doctors are also

faced

> with a group of children from whom it is very difficult to obtain

a

> description of what is wrong with them. Many autistic children are

> nonverbal and have behavioral problems so that the physician

cannot

> trust their response. Unless a treatment protocol is developed,

many

> of these children will live with painful, undiagnosed medical

> conditions that will grow more serious as they become teenagers

and

> adults.

>

> The success of the Harvard-Mass General study holds out hope to

> millions of children with autism of receiving the standard of

medical

> care that they need.

>

> The Harvard-Mass General researchers have already had significant

> findings.

>

> Dr. Tim Buie, a pediatric gastroenterologist from Harvard Mass

> General, has performed more than 500 gastrointestinal endoscopies

> with biopsies on autistic children. His findings show that more

than

> half of these children had treatable gastrointestinal problems

that

> ranged from moderate to severe including esophagitis, gastritis

and

> enterocolitis along with the presence of lymphoid nodular

> hyperplasia.

>

> In a recent conference Buie echoed the opinion of a growing number

of

> clinical researchers and practitioners treating autistic

> patients. " These children are ill, in distress and pain, and not

just

> mentally, neurologically dysfunctional, " he said.

>

> After diagnosis, Dr. Buie has successfully treated his patients by

> replacing suspected enzyme and probiotic deficiencies. The results

> have been significant improvements in his patients' conditions.

>

> Left untreated these gastrointestinal problems would further

> complicate neurological problems and exacerbate physical problems

and

> other symptoms of autism.

>

> In a significant conclusion, Dr. Buie believes that many of the

> symptoms of autism such as self abusive behavior including self-

> mutilation, head-banging, unexplained outbursts, atypical sleep

> patterns, disrupted sleep or night awakenings, are actually

symptoms

> of pain that a child is not able to communicate.

>

> The Harvard research team presented their research proposal to the

> Northwest Autism Foundation and a select group of doctors and

> scientists in Portland last fall. A summary of their proposal

> accompanies this presentation.

>

> The Harvard team of researchers including Dr. Harlan Winter, Dr.

> Rafail Kushak and Dr. Buie are committed to providing the

scientific

> evidence needed to establish gastrointestinal findings and develop

> successful methods of treatment. This research will be used to

> establish a basis for the treatment of autistic children at

various

> medical centers.

>

> An important component of the Harvard-Mass General proposal is to

> establish a network of " centers of excellence " at medical

> universities to treat autistic children.

>

> The centers will define and follow a standard of care. They also

> envision that the centers will be linked in a consortium that will

> collect data and statistical correlations. The collective database

> that will develop will become the basis for clinical treatment

> protocols for autism.

>

> The Northwest Autism Foundation supports the Harvard – Mass

General

> Study. We propose that the necessary research be funded to

complete

> this project. The researchers are seeking less than $500,000 to

> continue their scientific work to completion.

>

> The cost to the country of an untreated child with autism for

> education and social services is over $2 million plus the untold

> agony and frustration of a devastated family. An investment of

less

> than $500,000 to begin a solution with the Harvard-Mass General

Study

> is an opportunity that should not be missed.

>

> Initial Autism Research Findings at Harvard - Massachusetts

General

> Research Experience:

>

> Over 400 patients evaluated

>

> Ages 14 Months to 20 Years

>

> 3:1 ratio of male:female patients

>

> Patients undergoing endoscopic procedure all had GI symptoms of

pain

> or diarrhea

>

> Endoscopy Findings:

>

> Esophagitis in 23 out of 111 (20%)

>

> Gastritis in 14 out of 111 (12%); 4 had Helicobacter pylori

>

> Duodenitis in 11 out of 111 (10%); 2 had Celiac Sprue (According

to

> Dr. Buie, all children with ASD should get a blood test for Celiac

> Sprue before going on a GF diet. Once they're on the diet, those

> antibodies are gone.)

>

> Eosinophilic Inflammation in 5 out of 111 (5%)

>

> Pancreatic Function Testing:

>

> Duodenal collection of pancreatic enzymes

>

> 10 out of 90 (11%) had low enzyme activity (This is a very high

> finding among general population.)

>

> 2 out of these 10 (20%) had total pancreatic insufficiency, 5 with

> multiple enzyme defects

>

> Carbohydrate Digestion:

>

> Lactase deficiency was found in 55% of ASD children tested

>

> Combined deficiency of disacchraridase enzymes was found in 15%

>

> Enzyme assays correlate well with hydrogen breath tests

>

> Colonoscopy Findings:

>

> Colitis was found in 11 of 89 patients (12%), none with features

of

> Ulcerative Colitis or Crohn's

>

> Histologic (biopsy reviewed) lymphoid nodular hyperplasia was

found

> in 15 of 89 patients (16%)

>

> Eosinophilic inflammation was found in 13 of 89 patients (14%);

cause

> or significance is unclear

>

> Neurotransmitters:

>

> Neurotransmitters are products which stimulate nerve activity

>

> A recent study showed elevation of several neurotransmitters in

> children with autism. These children were identified as autistic

at

> age 15 years; the abnormal neurotransmitters were already present

at

> birth on the heel stick blood screen.

>

> Every single neurotransmitter found in the brain is also found in

the

> gastrointestinal tract.

>

> Mass General Hospital has begun to analyze rectal biopsy specimens

> for neurotransmitter abnormalities.

>

> Well-established normals are still being clarified.

>

> So far, 2 patients with profound constipation have shown a

deficiency

> of 2 essential neurotransmitters that regulate motility.

>

> Conclusions:

>

> Autistic children commonly have GI symptoms.

>

> All experience published so far is a laundry list of observational

> data.

>

> The brain –gut connection in autism remains to be understood.

>

> Evidence-based studies are necessary in order to delineate these

> associations.

>

> Recommendations

>

> We must pay attention not only to the intestinal complaints of

these

> children, but consider behaviors and actions as potential

symptoms.

>

> We have to educate more than the families about GI issues; we must

> educate the professional community and involve them in the process

of

> caring for these children.

>

> Summary: Purpose of this Proposal

>

> To learn about the gastrointestinal function of children with

autism

> and determine if relationships exist between digestion, allergy,

> motility, and behavior.

>

> Contacts

>

> Harvard Medical School/Massachusetts General Hospital

>

> à Buie, MD

>

> à Harland Winter, MD

>

> à Rafail Kushak, MD

>

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Share on other sites

The vast majority of docs question everything we do. So do the

schools. My daughter is starting to speak at age 6. A few words, a

few attempts. The school reports " It's like the lights have turned

on. " You know what I'm giving her right? I don't bother to post it

in public -- but I am removing metal from her body. And this coincides

directly with her speech and connection to the world. And she's my

unvaxed kid.

Take a look at the comments I'm getting on my Huffington Post entry.

People demanding " Yeah, what KIND of mercury? Some salt will kill you

too. But it's not table salt. " And a person I think was my

pediatrician a few years ago says " Water will kill you too if you drink

too much. So you'd better stop drinking water. " (Although he and I

have had a GREAT back and forth on all of this, and he's being somewhat

facetious. He's actually a good guy.)

Kim

kimstagliano.blogspot.com

www.huffingtonpost.com

Fearless Voices contributor

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Share on other sites

Dr. Buie I do not think was allowed to do

this;  I had asked a long time ago.  He is a compassionate and proactive

doctor, who thinks outside the box.

 Like many professionals in mainstream  who

care for our children, he cannot always call the shots re: testing, etc.  

From: EOHarm [mailto:EOHarm ] On Behalf Of Hooker

Sent: Monday, December 11, 2006

5:58 PM

EOHarm

Subject: Re: Question

about stomach issues/ Give him this.

Can anyone tell me if Buie has looked at the presence

of measles

virus in the biopsies he has taken? He has confirmed the existence

of lymphoid nodular hyperplasia (LNH) but never stated anything

about MMR. I know that most likely took considerable

heat when he reported that all of his LNH biopsies contained measles

(vaccinia) virus so Buie may be cautious in revealing

such " unpopular " findings...

>

> HARVARD UNIVERSITY AND MASSACHUSETTS GENERAL HOSPITAL are

> collaborating on a study to establish a medical protocol for the

> treatment of autism. They have already made significant medical

> observations in treating over 600 children with autism.

>

> Even though autism has reached epidemic proportions, affecting

more

> than 600,000 children in this country and millions of children

> worldwide, the medical community lacks the scientific data

necessary

> to medically treat these children.

>

> Without this research or similar research, autism will continue to

be

> viewed and treated as just a neurological dysfunction. Tragically,

> its victims will continue to suffer, untreated, with severe,

> biological illnesses.

>

> The Harvard-Mass General study is remarkably the first major study

> being conducted to establish a medical basis for the treatment of

> autism.

>

> Twenty years ago, doctors considered autism an " untreatable

> condition. " In many cases a diagnosis of autism ultimately

sentenced

> a child to an asylum.

>

> According to Time Magazine, May 6, 2002, " the latest studies,

> (however), suggest that as many as 1 in 150 kids age 10 and

younger

> may be affected by autism or a related disorder. " The problem of

the

> rising rate of autism is compounded by the lack of knowledgeable

> medical treatment.

>

> The dilemma for physicians is not having a medical care protocol

> based on valid research data to treat autism. Doctors are also

faced

> with a group of children from whom it is very difficult to obtain

a

> description of what is wrong with them. Many autistic children are

> nonverbal and have behavioral problems so that the physician

cannot

> trust their response. Unless a treatment protocol is developed,

many

> of these children will live with painful, undiagnosed medical

> conditions that will grow more serious as they become teenagers

and

> adults.

>

> The success of the Harvard-Mass General study holds out hope to

> millions of children with autism of receiving the standard of

medical

> care that they need.

>

> The Harvard-Mass General researchers have already had significant

> findings.

>

> Dr. Tim Buie, a pediatric gastroenterologist from Harvard Mass

> General, has performed more than 500 gastrointestinal endoscopies

> with biopsies on autistic children. His findings show that more

than

> half of these children had treatable gastrointestinal problems

that

> ranged from moderate to severe including esophagitis, gastritis

and

> enterocolitis along with the presence of lymphoid nodular

> hyperplasia.

>

> In a recent conference Buie echoed the opinion of a growing number

of

> clinical researchers and practitioners treating autistic

> patients. " These children are ill, in distress and pain, and not

just

> mentally, neurologically dysfunctional, " he said.

>

> After diagnosis, Dr. Buie has successfully treated his patients by

> replacing suspected enzyme and probiotic deficiencies. The results

> have been significant improvements in his patients' conditions.

>

> Left untreated these gastrointestinal problems would further

> complicate neurological problems and exacerbate physical problems

and

> other symptoms of autism.

>

> In a significant conclusion, Dr. Buie believes that many of the

> symptoms of autism such as self abusive behavior including self-

> mutilation, head-banging, unexplained outbursts, atypical sleep

> patterns, disrupted sleep or night awakenings, are actually

symptoms

> of pain that a child is not able to communicate.

>

> The Harvard research team presented their research proposal to the

> Northwest Autism Foundation and a select group of doctors and

> scientists in Portland

last fall. A summary of their proposal

> accompanies this presentation.

>

> The Harvard team of researchers including Dr. Harlan Winter, Dr.

> Rafail Kushak and Dr. Buie are committed to providing the

scientific

> evidence needed to establish gastrointestinal findings and develop

> successful methods of treatment. This research will be used to

> establish a basis for the treatment of autistic children at

various

> medical centers.

>

> An important component of the Harvard-Mass General proposal is to

> establish a network of " centers of excellence " at medical

> universities to treat autistic children.

>

> The centers will define and follow a standard of care. They also

> envision that the centers will be linked in a consortium that will

> collect data and statistical correlations. The collective database

> that will develop will become the basis for clinical treatment

> protocols for autism.

>

> The Northwest Autism Foundation supports the Harvard – Mass

General

> Study. We propose that the necessary research be funded to

complete

> this project. The researchers are seeking less than $500,000 to

> continue their scientific work to completion.

>

> The cost to the country of an untreated child with autism for

> education and social services is over $2 million plus the untold

> agony and frustration of a devastated family. An investment of

less

> than $500,000 to begin a solution with the Harvard-Mass General

Study

> is an opportunity that should not be missed.

>

> Initial Autism Research Findings at Harvard - Massachusetts

General

> Research Experience:

>

> Over 400 patients evaluated

>

> Ages 14 Months to 20 Years

>

> 3:1 ratio of male:female patients

>

> Patients undergoing endoscopic procedure all had GI symptoms of

pain

> or diarrhea

>

> Endoscopy Findings:

>

> Esophagitis in 23 out of 111 (20%)

>

> Gastritis in 14 out of 111 (12%); 4 had Helicobacter pylori

>

> Duodenitis in 11 out of 111 (10%); 2 had Celiac Sprue (According

to

> Dr. Buie, all children with ASD should get a blood test for Celiac

> Sprue before going on a GF diet. Once they're on the diet, those

> antibodies are gone.)

>

> Eosinophilic Inflammation in 5 out of 111 (5%)

>

> Pancreatic Function Testing:

>

> Duodenal collection of pancreatic enzymes

>

> 10 out of 90 (11%) had low enzyme activity (This is a very high

> finding among general population.)

>

> 2 out of these 10 (20%) had total pancreatic insufficiency, 5 with

> multiple enzyme defects

>

> Carbohydrate Digestion:

>

> Lactase deficiency was found in 55% of ASD children tested

>

> Combined deficiency of disacchraridase enzymes was found in 15%

>

> Enzyme assays correlate well with hydrogen breath tests

>

> Colonoscopy Findings:

>

> Colitis was found in 11 of 89 patients (12%), none with features

of

> Ulcerative Colitis or Crohn's

>

> Histologic (biopsy reviewed) lymphoid nodular hyperplasia was

found

> in 15 of 89 patients (16%)

>

> Eosinophilic inflammation was found in 13 of 89 patients (14%);

cause

> or significance is unclear

>

> Neurotransmitters:

>

> Neurotransmitters are products which stimulate nerve activity

>

> A recent study showed elevation of several neurotransmitters in

> children with autism. These children were identified as autistic

at

> age 15 years; the abnormal neurotransmitters were already present

at

> birth on the heel stick blood screen.

>

> Every single neurotransmitter found in the brain is also found in

the

> gastrointestinal tract.

>

> Mass General Hospital

has begun to analyze rectal biopsy specimens

> for neurotransmitter abnormalities.

>

> Well-established normals are still being clarified.

>

> So far, 2 patients with profound constipation have shown a

deficiency

> of 2 essential neurotransmitters that regulate motility.

>

> Conclusions:

>

> Autistic children commonly have GI symptoms.

>

> All experience published so far is a laundry list of observational

> data.

>

> The brain –gut connection in autism remains to be understood.

>

> Evidence-based studies are necessary in order to delineate these

> associations.

>

> Recommendations

>

> We must pay attention not only to the intestinal complaints of

these

> children, but consider behaviors and actions as potential

symptoms.

>

> We have to educate more than the families about GI issues; we must

> educate the professional community and involve them in the process

of

> caring for these children.

>

> Summary: Purpose of this Proposal

>

> To learn about the gastrointestinal function of children with

autism

> and determine if relationships exist between digestion, allergy,

> motility, and behavior.

>

> Contacts

>

> Harvard Medical School/Massachusetts General Hospital

>

> à Buie, MD

>

> à Harland Winter, MD

>

> à Rafail Kushak, MD

>

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