Guest guest Posted December 11, 2006 Report Share Posted December 11, 2006 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2006 Report Share Posted December 11, 2006 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 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2006 Report Share Posted December 11, 2006 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2006 Report Share Posted December 12, 2006 , Send your colleague to the next DAN! conference. Poor kid, sounds like his Dad is his biggest problem. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2006 Report Share Posted December 13, 2006 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 > Quote Link to comment Share on other sites More sharing options...
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