Following is information from recent hearing's in Washington. Those referring to HBOT are the testimonies
of Dr. Harch, Ken Stoller, and Julie Gordon. The one from Ken Stoller is a PDF document. I have copied
Autism Spectrum Disorders: An Update of Federal Government Initiatives and Revolutionary New Treatments of Neurodevelopmental Diseases
Thursday, May 06, 2004 2:00 PM
Opening Statement of Chariman Dan Burton
The Subcommittee is convening today to examine the advances in Federal Government initiatives, as well as new treatments that have been shown to benefit the medical condition of individuals afflicted with an Autism Spectrum Disorder.
As many of us already know, the incidences of autism have become increasingly prevalent in modern-day society. Once considered a rare disease, effecting roughly 1 in 10,000 children, autism now affects 1.5 Million of our Nation's children, and this problem continues to escalate rapidly.
According to a recent "Autism Alarm" released by the U.S. Department of Health and Human Services (HHS), the Centers for Disease Control (CDC), and the American Academy of Pediatrics, currently 1 out of every 6 children are diagnosed with a developmental disorder and / or behavioral problem. Even more alarming, today 1 out of every 166 children in the United States is being diagnosed with an Autism Spectrum Disorder. This major healthcare crisis is clearly reaching epidemic proportions, and will not just simply "go away."
As such, the United States government has rightfully begun to acknowledge the present and future public health implications of this autism epidemic by establishing an Interagency Autism Coordinating Committee (IACC). The IACC is comprised of representatives from HHS, the National Institutes of Health, the Department of Education, as well as various non-governmental organizations and parental support groups.
The IACC meets on a bi-annual basis to discuss and coordinate the various research projects with regard to autism, as well as to keep an open dialogue in addressing the numerous healthcare and educational needs of individuals with autism.
To further address the concerns of the autism community, HHS and the Department of Education at long last sponsored the first-ever "National Autism Summit" in November 2003. Some of the best scientific and medical researchers, as well as autism activists, key Members of Congress, and a host of parental support groups initiated an open dialogue on the status of research initiatives.
This summit was essential to bridging the relationship between the government, non-governmental organizations, and private citizens.
To better explain the status of Federal Government autism initiatives, the Subcommittee has the pleasure of hearing testimony today from the Honorable Troy Justesen (Justice son), the Acting Assistant Secretary in the Office of Special Education and Rehabilitative Services, at the U.S. Department of Education.
During my tenure as the Chairman of the Full Committee on Government Reform, and as the current Chair of this Subcommittee, I have convened 20 hearings on the topics of Autism, vaccine safety, and the detrimental health effects of Mercury-containing medical products.
During these investigations, numerous scientists from around the globe have testified before the Committee and have presented credible peer-reviewed research studies that indicated a direct link between the exposure of Mercury, a widely known neurotoxin, and the increasing incidences of autism.
Because autistic individuals typically have a high concentration of Mercury stored in their bodies, many doctors are concerned with how exactly they can safely remove these toxins from their patients, without exposing them to greater medical risks.
One popular method to remove this poisonous metal, called chelation therapy, involves an intravenous solution that disperses and collects Mercury, ultimately to be flushed out of the body. Unfortunately, because of the way in which this therapy is administered, it is not recommended for use in children. Dr. Rashid Buttar (Rah-sheed, Boot-tar), has developed a groundbreaking transdermal chelator that has proven safe to use in treating pediatric patients. Dr. Buttar (Boot-tar) is testifying before the Subcommittee today to speak on his personal success and application of this groundbreaking treatment.
Another cutting edge medical development currently being tested for use in autistic patients is Hyperbaric Oxygen Therapy. This treatment, which involves the delivery of pressurized oxygen to a patient, has been recently used to assist with the regeneration of neurons in brain-injured individuals. Dr. Paul Harch, President of the International Hyperbaric Medical Association, will discuss how the use of hyperbarics may be a viable therapy to administer to persons afflicted with an autism spectrum disorder.
In addition, Dr. Ken Stoller (Stole-er), has been invited to further supplement the testimony of Dr. Harch and discuss additional uses for hyperbaric treatments for patients afflicted with other neurodevelopmental diseases and injuries.
Finally, to gain the perspective of parents of brain-injured children, Ms. Julie Gordon, Founder and Director of MUMS (Mothers United for Moral Support), will be testifying today in regard to how coalitions of parents have come together and effectively lobbied for the advancement of their children's health.
As I stated before, autism is an epidemic that directly affects millions of Americans, including every single taxpayer in the United States. I am pleased to see that our Nation's health and education agencies are beginning to do their part to address this pandemic situation, and I implore them to continue their fight against these devastating diseases.
I would like to thank all of our witnesses for making the long trip to Washington for this most important hearing, and I look forward to hearing about the revolutionary treatments and current research that will hopefully one day completely eradicate these spectrum disorders.
Department of Education
Statement by Troy R. Justesen, Ed.D.
Acting Deputy Assistant Secretary
Office of Special Education and Rehabilitative Services on Autism Spectrum Disorders: An Update of Federal Government Initiatives and Revolutionary New Treatment of Neurodevelopmental Diseases
May 6, 2004
Mr. Chairman and Members of the Subcommittee:
Good afternoon, I am Troy Justesen, the Acting Deputy Assistant Secretary for Special Education and Rehabilitative Services at the Department of Education. Thank you for the opportunity to provide an update on the Department of Education's initiatives for children with Autism Spectrum Disorders (ASD) served under the Individuals with Disabilities Education Act (IDEA). Over the past 28 years, the IDEA has been successful in ensuring that children with disabilities have access to a free appropriate public education. Prior to the passage of the IDEA, only one in five students had access to appropriate special education services in the public schools. More than 1 million children with disabilities were excluded from the public education system and another 3.5 million children with disabilities did not receive appropriate services. Today, more than 6.9 million children with disabilities are provided early intervention and special education services.
States reported a 1.6% annual increase from 1999-2002 in the number of children with disabilities ages 6 through 21 receiving special education and related services. The number of children with autism, ages 6 through 21, receiving special education and related services increased at an average annual rate of 22% during the same time period. It is evident to school personnel that the number of children seeking services for autism spectrum disorders has greatly increased. Epidemiologists are investigating whether the numbers reflect more inclusive diagnostic criteria or, in fact, constitute a true increase in the incidence of autism spectrum disorders (ASD) in children.
The Office of Special Education Programs (OSEP) within the Office of Special Education and Rehabilitative Services (OSERS) administers the Individuals with Disabilities Education Act (IDEA). OSEP is committed to furthering effective evidence-based practices for children with ASD through research, model demonstration, outreach, technical assistance, and personnel training projects funded by IDEA, Part D discretionary investments. OSEP has invested $8.6 million of discretionary funding in fiscal year 2004 for projects that addressed the needs of children and youth with autism spectrum disorders. These investments fund a total of 51 projects, 30 of which focus solely on autism spectrum disorders and 21 of which are designed to improve services and prepare personnel to meet the needs of children with ASD as part of a larger group of children with other low-incidence disabilities.
One of the most pressing challenges for school systems in educating children with autism spectrum disorders is keeping up with the increase in highly skilled personnel needed to provide appropriate services. Some of the instructional strategies that are effective for children with ASD are relatively complex and demand sufficient practice to achieve success. We have continued to focus on meeting this need since it was first highlighted in the National Academy of Sciences Report, Educating Children with Autism, commissioned by OSEP in 2001. OSEP continues to make a number of investments that are intended to prepare competent, highly trained personnel to work effectively with children with ASD in natural environments, family-focused settings, schools, and communities. For example, the Professional Development in Autism (PDA) Center is a five-year, $5 million national research and training center that is designed to increase the capacity of local school districts, families, and communities to meet the needs of students with ASD. The PDA Center will have a national impact through a consortium of six sites across the country: The University of Washington, the University of Kansas, the University of Colorado at Denver, the University of South Florida, the Oakstone Academy in Ohio, and the Maryland Coalition for Inclusive Education. The center provides intensive, hands-on training to teams of educators. In addition to training, the PDA center will also develop and disseminate useful materials, such as instructional procedures, activity ideas, and family/child support plans for children with ASD. OSEP is currently funding projects that specifically address the personnel- preparation needs of teachers and related service providers who will work with children with ASD and their families. These projects target various areas including early intervention, speech and language pathology, and the development of interdisciplinary personnel. OSEP also funds additional personnel-preparation projects that involve training personnel to work with children who have autism spectrum disorders among other low-incidence disabilities. OSEP continues to assume a leadership role in identifying and disseminating effective interventions that improve outcomes for children with ASD and their families. Initiatives are under way to develop and support promising practices in identification, assessment, and interventions. For example, the average age of diagnosis for children with ASD in the United States is 3 to 4 years of age; although most families initially express concern to their pediatricians by the time their child is 18 months old. Through OSEP-funded research projects, Early Identification of Children with Autism Spectrum Disorders at Vanderbilt University and First Words at the University of Florida, researchers have succeeded in accurately distinguishing some children with autism from children with typical development and children with other developmental delays beginning as early as 12 months of age. Early and accurate diagnosis enables very young children with autism spectrum disorders to reap the benefits of earlier intervention, using a range of behavioral and naturalistic approaches. Research indicates that intervention provided to a child before the age of three and a half has a much greater impact than that after age five. Although there have been significant advances in genetic and biomedical research on ASD, there is currently no reliable biological marker for either autism or ASD. Therefore, screening and diagnosis for ASD must be based on behavioral features. OSEP-funded model demonstration programs have developed and implemented successful practices for working with children with ASD and their families. For example, the Seattle Public School System has adopted a program that blends several approaches to meet the needs of children, families, and school personnel, including an OSEP-funded model approach developed at the University of Washington Experimental Education Unit. This model approach incorporates developmentally appropriate treatments, including extended instructional time, family support, transition support, and collaborative, coordinated services, within an inclusive early childhood experience to yield improved outcomes for young children with autism and their families. Other successful model demonstration projects are being replicated in multiple states. For example, the LEAP Learning Experiences outreach project at the University of Colorado at Denver is being replicated in three states. This program provides training to early intervention staff working with children with ASD. Project DATA, developed at the University of Washington, has expanded to an outreach training project designed to help district personnel implement and evaluate school-based programs for young children with autism. Addressing the often-complex needs of children with ASD is a salient research and practice issue. Autism Spectrum Disorders are characterized as a triad of disabilities that include communication, social interaction, and restrictive or repetitive behaviors. In order to address the need for research on communication skills for children with autism, Northeastern University is examining whether speech output from synthetic or digitized speech-generating devices will result in more efficient requesting and vocalizations among students with autism.
Current intervention and practice projects related to ASD include the Early Social Interaction Project at Florida State University, which is designed to teach very young children with ASD in natural environments, and a project at the University of Florida through which an evidence based curriculum is being developed to facilitate social success of young children with autism in natural settings.
Autism spectrum disorders pose unique and difficult challenges for families. The Department is committed to addressing these challenges and supporting families through a variety of projects. For example, a project through the University of Massachusetts at Boston addresses parent involvement in public school programs, while FAMILY LINKS at Case Western Reserve University uses a developmental, relationship-focused intervention for children with autism. Project TASK in Ohio addresses the needs of children with autism as they move to school from kindergarten.
To maximize the impact of the Department's initiatives on behalf of children with autism spectrum disorders, OSEP maintains ongoing partnerships with the medical research and practice communities and with other Federal agencies. The Interagency Autism Coordinating Committee (IACC), chaired by the National Institute of Mental Health, is one example of a formal Federal agency partnership.
The Department has participated actively as a member of the IACC since its first meeting in 2001. Through the work of this Committee, the Department is able to exchange information on autism initiatives among government agencies and with advocacy and other groups focused on autism, and improve the coordination of autism-related activities. In a joint effort, the IACC, with the Department of Health and Human Services and the Department of Education, hosted the Autism Summit Conference in November 2003. This conference complemented the activities of the several government organizations that have been members of the IACC since its inception. At the conference, IACC members discussed a ten-year plan for implementation by Federal agencies to address research goals and activities focused on enhancing understanding of the causes and best treatment options for autism. OSEP funds technical assistance centers and projects to assist states in implementing effective evidence-based practices to support children served under the IDEA. Centers, such as the National Early Childhood Technical Assistance Center in North Carolina and the National Center on Dispute Resolution in Oregon, continue to focus resources on ensuring that information on effective practices in ASD and other disabilities are made available to State Educational Agencies. OSEP-funded Parent Training and Information Projects and Community Parent Resource Centers in 50 states and in many communities provide information and advocacy for families of children with disabilities, including autism, as they address their child's complex developmental and educational needs. Access for all families of children with autism spectrum disorders, regardless of family resources, to programs based on effective, evidence-based, well-implemented, models remains the highest priority.
In closing, students with autism spectrum disorders present unique challenges to families and schools. The IDEA Part D programs play a critical role in supporting states and local districts in providing evidence-based practices for children with disabilities and their families, including those with autism spectrum disorders, to help ensure that no child is left behind.
That concludes my prepared remarks. I will be happy to answer any questions.
Autism, The Misdiagnosis of Our Future Generations
US Congressional Sub-Committee Hearing
May 6, 2004
Rashid A. Buttar, DO, FAAPM, FACAM, FAAIM
Vice Chairman, American Board of Clinical Metal Toxicology
Visiting Scientist, North Carolina State University
Over the last 15 years, the incidence of Autism has rapidly increased in the industrialized nations with the United States and the United Kingdom having the sharpest rise. A lot of the attention has been given regarding the link between mercury and autism, with mercury being the possible factor underlying the etiology of this condition. The issue of whether mercury plays a role in Autism or other neurodevelopmental disorders has been the subject of long debate and extreme political discourse but the evidence is overwhelmingly obvious to even the simplest of intellects once the data is objectively reviewed. The prevalence of mercury in our society is endemic in nature. The association of mercury with chronic disease in the US "medical literature" exists but is very anemic. However, when searching under Toxline under the ATSDR (Agency of Toxic Substances and Disease Registry), a division of CDC, one finds all scientific literature which also includes didactic literature, NOT just the "medical literature". Not surprisingly to advanced researchers and physicians, the association of mercury to chronic diseases is well documented in the didactic scientific literature. The search for the association between mercury and cardiovascular disease, the number one killer in the industrialized world, revealed 358 scientific papers exemplifying the relationship. The search for the association between mercury and cancer, the number two killer in the industrialized world, revealed 643 scientific papers exemplifying the relationship. Both of these conditions represent 80% cause of all deaths in the industrialized world, according to the WHO (World Health Organization) as published in 1998. But the association of mercury with neurodegenerative diseases is the most significant, with the references numbering 1445. The inevitable question is how do we get exposed to mercury? The sources surround us, from mercury amalgams in our teeth, to the contamination of our water sources, inhalation of combustion from fossil fuel, fish that we consume, virtually all vaccinations, and via breast milk, just to name a few. So if mercury is so devastating, why is it allowed to be in our flu shots, vaccines, foods, etc.? This is the "million dollar" question, although it should be evident to the well informed the answer will be somewhere along the money trail. Increased exposure to mercury through thimerosal containing vaccines is one of the most important issues at hand. Thimerosal (also known as Marthiolate) is the common name of a substance known as ethyl mercurithiosalicylic acid. The overburdening knowledge that thimerosal is converted to ethyl mercury (a substance over a thousand times more destructive than inorganic mercury) in less than one minute after being introduced into the body should give great concern to those appointed to protect the public. Yet, it is virtually ignored. Why is this highly toxic substance still allowed to be a constituent of our vaccines used to inoculate our precious children, our own future generations? For example, the MSDS on thimerosal from Eli Lilly, documented on their own letter head as far back as July 13, 1991 clearly states that thimerosal is a "product containing a chemical known to the State of California to cause birth defects or other reproductive harm". Yet Eli Lilly continues to use thimerosal in the manufacturing process for vaccines. However, the vaccine issue must not overshadow the cumulative mercury exposure experienced by the patient during gestation and early infancy. These additional exposures besides the vaccine history include dietary mercury content, dental amalgam fillings which contribute greatly to the maternal mercury load, Rhogam (immunoglobulin) administration to mother during gestation, exposure to combustion of fossil fuels, water contamination, and mercuric compounds used in skin products. Mercury's causes damage by various mechanisms which include: competitive and noncompetitive inhibition of enzyme activity by reversibly or irreversibly binding to active sulfur, binding at the sites off and displacing other divalent cations, like magnesium, zinc, copper, and manganese causing a disruption of enzyme systems, disrupting critical electron transfer reactions, and complexing molecules and inducing a change in structure or conformation which causes them to be perceived as foreign by the body's immune defense and repair system (hapten reactions) resulting in hypersensitivity that can potentiate or exacerbate autoimmune reactions. Mercury alters biological systems because of its affinity for sulfhydryl groups which are functional parts of most enzymes and hormones. Tissues with the highest concentrations of sulfhydryl groups include the brain, nerve tissue, spinal ganglia, anterior pituitary, adrenal medulla, liver, kidney, spleen, lungs heart and intestinal lymph glands. But most relevant to us for the purposes of this hearing is that mercury has clearly been shown to causes a denudation of the neurofibrils resulting in direct damage to the neuronal cells. In addition, mercury exposure leads to many secondary clinical problems resulting from the aforementioned mechanisms of damage, such as immuno-suppression, allowing for opportunistic infections, allergies, GI dysbiosis, etc. Addressing all other issues in children with Autism is analogous to attempting to put out fires without addressing the cause of the fire itself. The fire will keep re-igniting unless the "spark" is eliminated. It is the elimination of this "spark", i.e. mercury, for which we now have an easy and effective solution. Along with some supportive therapies, Autism and certain other chronic neurodegenerative diseases such as Alzheimer's can be fully and permanently reversed if appropriately treated. This is NOT theory. It has already been clinically validated on a repetitive basis. But first, let us answer the question why some people are affected while others show no manifestations of mercury toxicity, despite living in the same environments. In our case, the discussion will be limited to mercury, which is considered to be the second most toxic metal known to man but this explanation is applicable to most other heavy metals as well. Most individuals exposed to mercury as well as other heavy metals, have the ability to at least begin the process of eliminating these heavy metal out of their system. But not everyone has this ability and the extent of variability in the ability of an individual to detoxify their systems will determine the severity of the symptoms of toxicity. Slides #10 to #14 show the typical individual who can get rid of mercury with appropriate treatments. Despite having been exposed to severe levels of mercury vapor, this patient named Robin T. was able to detoxify once appropriately treated with DMPS. Her mercury level was almost 22 fold greater or 2200% more than what is considered to be safe but with appropriate treatments, her levels returned to normal and her symptoms of mercury toxicity resolved. However, patients with impaired detoxification pathways do not show similar results on testing. Their bodies are unable to release the mercury and/or other metals and on testing, the mercury does not appear. The basis of our treatment protocol for children diagnosed with autism was determined by my clinical observation that certain individuals were unable to detoxify mercury like the vast majority of people appear to have the ability to do so. Slides #16 to # 21 show the case of Karen R. who showed no appreciable levels of mercury despite appropriately being "challenged" with DMPS by two different physicians over a year apart. But in Karen R.'s case, she could not detoxify her system effectively despite being treated appropriately with the correct diagnostic methods. In Karen R's case, she needed to have persistent treatment for a period of almost 2 years, as seen on slides #16 to #21 but as you will notice, her mercury levels continued to exponentially RISE until her last test which shows the results dramatically drop. What is most interesting is that as the test results revealed an increase in the mercury levels, the patient dramatically began to improve clinically. The reason the levels of mercury actually rose in each subsequent test, is that this testing method only determines how MUCH mercury and/or other metals we are able to remove. As treatment continued, we were effectively able to remove a greater quantity of mercury during each and every treatment. It is important to note that this patient received treatments every week but the test results were obtained only every 20 weeks. Despite this disparity between treatments and testing, we see a dramatic and steady increase in mercury levels on testing, directly correlated with significant improvements clinically and alleviations of symptoms. In this particular patient, the symptoms for which she presented included glactorhea, ataxia, dysphagia, inability to articulate with a new onset of stuttering, arrhythmia, chest pain, myalgias, artharalgias, hirtuism, cephalgia, insomnia, fatigue, malaise, depression, and anxiety. On presentation, the patient had notified me she had seen 16 other physicians in the previous 5 years and if I could NOT help her, she would "take care" of the problems herself because she could no longer live this way. This patient, Karen D. was 34 years old when she presented to me. The level of mercury measured during each of Karen D.'s tests was inversely proportionate to the amount of mercury remaining in her system. The answer to the question of why some people are able to effectively release mercury and/or show absolutely no manifestations of mercury toxicity despite having lived in the same exact environments and had the same level of exposure to metals while others are severely affected with serious clinical manifestations, is not as difficult to answer as one would initially believe when the multiple variables are considered, which include the type of exposure, biological individuality and genetic predisposition. Drs. Michael Godfrey, et al, reported one such variable explaining the variability of individuals in detoxifying mercury in a landmark paper published in the Journal of Alzheimer's Disease in 2003, entitle "Apolipoprotein E Genotyping as a Potential Biomarker for Mercury Neurotoxicity". Apolipoprotein-E (apo-E) genotyping has been investigated as an indicator of susceptibility to heavy metal (i.e., lead) neurotoxicity. Moreover, the apo-E epsilon 4 allele is a major risk factor for neurodegenerative conditions, including Alzheimer's disease (AD). A theoretical biochemical basis for this risk factor is discussed herein, supported by data from 400 patients with presumptive mercury-related neuro-psychiatric symptoms and in whom apo-E determinations were made. A statistically relevant shift toward the at-risk apo-E 4 groups was found in the patients (...0 001). The patients possessed a mean of 13.7 dental amalgam fillings and 31.5 amalgam surfaces. This far exceeds the number capable of producing the maximum identified tolerable daily intake of mercury from amalgam. The clinical diagnosis and proof of chronic low-level mercury toxicity has been difficult due to the non-specific nature of the symptoms and signs. Dental amalgam is the greatest source of mercury in the general population and brain, blood and urine mercury levels increase correspondingly with the number of amalgams and amalgam surfaces in the mouth. Confirmation of an elevated body burden of mercury can be made by measuring urinary mercury, after provocation with 2,3, dimercapto-propane sulfonate (DMPS) and this was measured in 150 patients. Apo-E genotyping warrants investigation as a clinically useful biomarker for those at increased risk of neuropathology, including AD, when subjected to long-term mercury exposures. Additionally, when clinical findings suggest adverse effects of chronic mercury exposure, a DMPS urine mercury challenge appears to be a simple, inexpensive procedure that provides objective confirmatory evidence. An opportunity could now exist for primary health practitioners to help identify those at greater risk and possibly forestall subsequent neurological deterioration. We started treating children with Autism first in 1996. By 1997, we were being referred patients by a pediatric neurologist, who was follwing a mutual patient and observed significant changes in the child's behavior after implementation of our treatments. However, by the end of 1998, taking care of children with special needs proved more than I wanted to handle. Although we had far better success than the traditional approach, our treatments had not been responsible for "normalizing" any children. The emotional component was also overwhelming, just having to deal with the pain and frustration of the parents of these children. As a result, we stopped accepting new patients with the diagnosis of Autism or any type of developmental delay in early 1999. On January 25, 1999, my son Abid Azam Ali Buttar was born. By the time he was 15 months old, he was saying "Abu" which means father in Arabic, and a few other words such as "bye bye". But by the age of 18 months, my son had not only failed to progress in his ability to speak, but had also lost the few words he had been saying. At the age of 36 months, he had absolutely no verbal communication except for the one syllable that he would utter, "deh", on a repetitive basis. As he grew older, I began to worry more and more that he was suffering from a developmental delay. He exhibited the same characteristics that so many parents with children that have developmental delays have observed, such as stemming, walking on tip toes, and lack of eye contact. Sometimes I would call to him but his lack of response would convince me there must be something wrong with his hearing. Certain sounds would make him cringe and he would put his hands on his ears to block the obvious discomfort he was experiencing. He would spend hours watching the oscillation of a fan. But through all this, when he would make eye contact with me, his eyes would say, "I know you can do it Dad". The expression he would give me, for just an instant, would be that of a father encouraging his son. The oceans of tears that I cried and the hours that I spent trying to figure out what was happening to my son are no different than that of any other parent in the same situation. The only difference was that I was one of only a 190 doctors through out the US board certified in clinical metal toxicology. And if this was metal related, I should know how to fix this problem. I tested him and re-tested him and tested him again, searching for mercury. Slides # 23 to 27 show the results of my son's test and how his system showed no appreciable levels of mercury. But the older he became, the more obvious it became that my son was not developing as he was meant to be developing. My son was not meant to be this way and that was the only one thing that I knew for certain. About the same time while desperately searching for the cause of the same ailment that had afflicted so many of my own patients previously, I had been invited to present a lecture regarding some of our research on IGF-1 and the correlation with cancer. I had notified the conference that I was too busy to present this lecture but when I learned that Dr. Boyd Haley was also scheduled to present at this conference, I changed my schedule and agreed to lecture just so I could meet and discuss my son's situation with Dr. Haley. That meeting turned out to be one of the key elements which resulted in our development and subsequent current protocol for treating children with autism, autism like spectrum and pervasive developmental delay. My son was the first one who went through this protocol once safety had been established. Dr. Haley told me of a study that had at the time, not yet been published. Just before the turn of the century, Holmes, Blaxill and Haley did a study assessing the level of mercury measured in the hair of 45 normally developing children versus 94 children with neurodevelopmental delays diagnosed as Autism using DSM IV criteria. The finding showed that the Autistic children had 0.47 parts per million of mercury in their hair where as the normally developing children had 3.63 parts per million, more that 7 times the same level of mercury as the Autistic children. Opponents of the mercury-neurodegeneration camp used this opportunity to state that this study clearly showed that mercury had NOTHING to do with Autism or any other neurodegenerative condition. However, they completely missed the point of the study. For the reader, the conclusion of the study is obvious, and in part, is reproduced below. "The reduced levels of mercury in the first baby haircut of autistic infants raise clear questions about the detoxification capacity of a subset of infants. Despite hair levels suggesting low exposure, these infants had measured exposures at least equal to control population, suggesting that control infants were able eliminate mercury more effectively. In the case of autistic infants, those in our sample were exposed to higher levels of mercury during gestation, through dental amalgams or Rho D immunoglobulin injections in the mother. The addition of multiple postnatal exposures to mercury in childhood vaccines would have more severe consequences in infants whose detoxification capacity is reduced or who may be closer to a dangerous threshold exposure. In the case of control infants, mercury hair levels were strongly affected by exposure levels, suggesting that detoxification and excretion played an important role in ensuring normal development in children with elevate toxic exposure relative to peers. If reduced overall mercury elimination is related to hair elimination, then autistic infants will retain significantly higher
levels of mercury in tissue, including the brain, than normal infants. In light of the biological plausibility of mercury's role in neurodevelopmental disorders, our study provides further insight into one possible mechanism by which early mercury exposures could increase the risk of autism."
These findings were published in the International Journal of Toxicology in 2003. Understanding these findings, along with my clinical experience with the case of Karen D. as previously detailed, led me to the conclusion that a more aggressive method of treatment was necessary compared to the DMSA and various other treatments I had to date employed in the attempt to document high levels of mercury in my son, which up to this point, had not been successful. The first two attempts with DMPS as a challenge treatment were unsuccessful, the first due to difficulty catching the urine since Abie was only 2 years old at the time, and the other due to loss of the urine specimen while being delivered to the laboratory. The third try with DMPS, which represented the 6th test we did on my son with all previous tests showing no appreciable levels of mercury, resulted in the findings on slide #29, the results that were reported to me on his 3rd birthday. His mercury level was over 400% that of safe levels. It is important to note that this level was only indicative of what we were able to "elicit or sequester" out of him. His actual levels were far greater.
I started his treatments on his 3rd birthday, using a rudimentary version of the current TD-DMPS (DMPS in a transdermal base) that my partner, Dr. Dean Viktora and I had played around with a few years previously. By the age of 41 months, 5 months after initiating treatment with the TD-DMPS, my son started to speak, with such rapid progression of his speech that his speech therapist was noted to comment how she had never seen such rapid progress in speech in a child before. Today at the age of 5, Abie is far ahead of his peers, learning prayers in a second language, doing large mathematical calculations in his head, playing chess and already reading simple 3 and 4 letter words. His attention span and focus was sufficiently advanced to the point of being accepted as the youngest child into martial arts academy when he was only 4. His vocabulary is as extensive as any 10 year old's, and his sense of humor, power to reason and ability to understand detailed and complex concepts constantly amazes me. This was the preliminary basis for our study that we initiated, which came about as a result of the extraordinary results obtained in the treatment of my son, Abie.
The Autism study consisted of 31 patients with the diagnoses of autism, autism like spectrum, and pervasive developmental delay. Inclusion criteria was simple, including an independent diagnosis of the above mentioned conditions from either a neurologist or pediatrician, and the desire of the parent to try the treatment protocol using TD-DMPS. All patients were enrolled sequentially as they presented to the clinic and only those who did not wish to participate in the TD-DMPS were not included. All 31 patients were tested for metal toxicity using four different tests: urine metal toxicity and essential minerals, hair metal toxicity and essential minerals, RBC metal toxicity, and fecal metal toxicity, all obtained from Doctor's Data Laboratory. These tests were performed at baseline, and repeated at 2 months, 4 months, 6 months, 8 months, 10 months, 12 months, and then every 4 months there after. All 31 patients showed little or no level of mercury on the initial baseline test results. Slide #37 shows an example of a baseline test result of one participant in the study showing very little mercury. In addition, all study patients had chemistries, CBC with differentials, lipid panels, iron, thyroid profiles and TSH drawn every 60 days. Further specialized testing also included organic acid testing (OAT test) from Great Plains Laboratory and complete diagnostic stool analysis (CDSA) from Doctor's Data Laboratory. If indicated, IgG mediated food allergy testing was also obtained but was not routinely performed. Compared to the baseline results all 31 patients showed significantly higher levels of mercury as treatment continued. Slide #39 shows significantly higher mercury levels in this same study patient after two months of treatment with the TD-DMPS, with results showing approximately a 350% increase from previous baseline levels. The improvements in the patients in the study correlated with increased yield in measured mercury levels upon subsequent testing. Essentially, what was noted was that as more mercury was eliminated, the more noticeable the clinical improvements and the more dramatic the change in the patient. The manifestations of this evidence for clinical improvements included many observations but were specifically quantifiable with some patients who had no prior history of speech starting to speak at the age of 6 or 7, sometimes in full sentences. Patients also exhibited substantially improved behavior, reduction and eventual cessation of all stemming behavior, return of full eye contact, and rapid potty training, sometimes in children that were 5 or 6 but had never been successfully potty trained. Additional findings reported by parents included improvement and increase in rate of physical growth increased, as well as the child beginning to follow instructions, becoming affectionate and social with siblings or other children, seeking interaction with others, appropriate in response, and a rapid acceleration of verbal skills. The results in many of these children has been documented on video and other physicians involved with this protocol have been successfully able to reproduce the same results. DMPS, or dimercaptopropane 1 sulfonate, is a primary chelator for mercury and arsenic. Slide 42 shows the chemical structure of DMPS. DMPS has pitfalls as well as advantages. The pitfalls include oral dosing which is the usual recommended dosing because it is approximately 50% to 55% absorbed by the gastrointestinal mucosa. As a result of already compromised gastrointestinal function and dysbiosis noted in most of these children, there is also be a decreased absorption of the DMPS when dosed orally, and with the severe gut vacillations prevalent in our society, DMPS by mouth becomes impractical. Most of the children that have taken the DMPS orally for more than 1 week continuously, begin complaining of abdominal pain, cramping and other GI distress. We tried the oral DMPS for almost 6 weeks before eliminating it as a possible therapeutic method. Intravenous methods of application were not an option in children so young, although is the preferred method I have used in my clinical practice for my adult patients with mercury toxicity. All study patients were also monitored for renal function, and mineral depletion. The key to success with this study was the constant and continuous "pull" of mercury by being able to dose it every other day and the compliance of patient and parents. Each patient was put on a protocol consisting of the transdermal DMPS (TD-DMPS). Transdermal DMPS is DMPS conjugated with a number of amino acids, delivered in highly specialized micro-encapsulated liposomal phospholipid transdermal base with essential fatty acids. The frequent dosing is one of the most important components of the TD-DMPS. It is important to note that DMPS is highly oxygen reactive and is very unstable when exposed to air. This and many other issues of delivery, stabilization, and oxidation have all been successfully identified and resolved over the last two years with the final result now pending patent. In addition, certain other components have been added to the TD-DMPS to potentiate the efficacy of treatment, such as the addition of various amino acids and glutathione. There are a number of agents that have been demonstrated to have clinical utility in facilitating the removal of mercury from someone who has demonstrated clinical signs and symptoms of mercury toxicity. The most important part of this systemic elimination process, however, is the removal of the source of mercury. Once this has been completed, treatment for systemic mercury detoxification can begin. The following is a summary of the most effective agent as well as the most commonly used agent that have been documented in the peer-reviewed literature.
1. The chemical name is Sodium 2,3 dimercaptopropane-1-sulfonate, this water soluble dimercaprol has 2 active sulfhydryl sites that form complexes with heavy metals such as zinc, copper, arsenic, mercury, cadmium, lead sliver, and tin.
2. The chemical structure of DMPS is:
CH2 CH CH2 S O3 NA
3. DMPS was developed in the 1950's by the Soviets as an antidote for the chemical warfare agent Lewisite.
3. It became commercially available in 1978, being produced by the German pharmaceutical company Heyl.
4. There has been extensive research in both safety and effectiveness of this drug in the 50 years of its existence and it is now considered to be the most effective therapy for the treatment of mercury toxicity, as mercury is bound to sulfur groups throughout the body and is therefore difficult to remove. The sulfur groups on this compound readily unseat the mercury from its attachment to sulfur in our tissues, then this compound is excreted through the kidneys unchanged.
5. DMPS is widely available throughout the United States as a compounded bulk drug and has been recognized by the FDA in that capacity.
Rashid A. Buttar, DO, FAAPM, FACAM, FAAIM Advanced Concepts in Medicine 8
6. DMPS is very safe when used properly. Side effects are very rare, but may include allergic reactions such as skin rashes. Most important is to monitor and supplement with appropriate doses of zinc and copper as these minerals are bound readily by DMPS in the same way as it binds mercury. This should be done prior to commencement of any DMPS treatment regimen, then periodically throughout the process.
7. DMPS can be taken orally, as over 50% is absorbed. Most trained chelation physicians in the United States utilize intravenous challenges, whereas most European physicians will challenge with oral DMPS.
8. Currently, the only professional medical organizations that teach and certify physicians in chelation therapy are the International College of Integrative Medicine and the American College for Advancement of Medicine. Both of these organizations periodically conduct workshops on mercury toxicity specifically with emphasis on both basic science knowledge and clinical evaluation and treatment.
9. With the increased concern of mercury toxicity as an environmental health threat and in recognition of the need to increase basic science research and clinical treatment of heavy metal toxicity, the American Board of Clinical Metal Toxicology was recently formed as an evolution of the American Board of Chelation Therapy. This Board will now expand greatly the educational opportunities for physicians interested in this health problem and offer certification procedures that will expand even further the work that has already been done.
10. As a result of the work of these organizations, a general protocol for the use of DMPS has been established which most certified physicians follow.
1. 2,3 dimercaptosuccinic acid is also a dithiol, like DMPS, and therefore is more effective that EDTA in removing mercury.
HOOC C C COOH
3. This chelator is an oral agent that is reportedly effective in removing both lead and mercury and is used frequently to treat children.
4. DMSA removes mercury both by way of the kidneys, though urine, and the liver, through bile and then the intestines.
5. DMSA has several disadvantages but also some advantages relative to DMPS:
Rashid A. Buttar, DO, FAAPM, FACAM, FAAIM Advanced Concepts in Medicine 9
a. DMPS remains in the body for a longer time than DMSA, therefore it is able to more thoroughly bind to mercury and eliminate greater amounts per treatment.
b. DMPS acts more quickly than DMSA.
c. DMPS is given intravenously, intramuscularly, or orally while DMSA is strictly an oral preparation.
6. DMSA is now thought to be potentially harmful if used in patients with excessively high levels of mercury. Therefore, DMSA is recommended for use only late in the mercury elimination process after the peripheral tissue load of mercury has been reduced by DMPS.
In our observation, DMSA did not show efficacy in removing mercury. Slides #26 and #29 show a comparison in the effect of pulling out mercury, completed less than 30 days apart in my son's case. The yield of DMPS compared to DMSA for removal of mercury in this example was 10 to 1. There is an intriguing explanation provided by Boyd Haley, DSc, to support my clinical observations to the lack of efficacy observed with the use of DMSA in treating children with autism and developmental delays. DMSA stands for dimercapto-succinic acid. Succinic acid is a major substrate in the citric acid cycle and DMSA is an analog of succinic acid. Therefore, DMSA would most likely act as an inhibitor of the enzyme in the citric acid cycle that uses succinic acid as a substrate. This would result in DMSA actually acting as a competitive inhibitor of succinic acid and in turn, would lead to a slowing down of, or inhibition of the citric acid cycle. Succinate produces FADH2 which is directly coupled to the electron transport chain and leads to ATP production. The competitive inhibition of this succinic acid by DMSA would thus, eventually result in an inhibition of ATP production leading to decreased energy utilization causing a significant burden and impaired ability of the physiological system to function correctly. In our clinical experience, the only effective method that has resulted in the consistent removal of mercury resulting in the elimination of this "spark" in the pediatric population is the TD-DMPS that was originally formulated only for the purposes of treating my son's developmental delay. Since it's implementation, we have now successfully treated scores of patients, many of whom have completely recovered but all of whom have improved since the implementation of this treatment. These results have been duplicated by other physicians involved with the care of patients with neurodegenerative disease processes. Children with Autism (mercury toxicity) have many resulting imbalances in their systems, including but not limited to significant allergies, systemic candidiasis, hormonal imbalances, gastrointestinal dysbiosis, immune dysfunctions, nutritional deficiencies, etc. However these are what I refer to as the "fires" of autism. All these, and other "fires" of autism result from one "spark". Mercury! Successfully addressing many or all of these "fires" will accomplish transient improvement but until the "spark" that constantly re-ignites these "fires" has definitively been eliminated, any improvement will be short lived at best. Mercury is NOT the fire. It is however, the spark that ignites and constantly re-ignites these "fires". In addition, this particular patient population seems to have antibodies to mercury binding fibrillarin, confirming the fact that mercury is the cause. But it's the spark, not the fire. Until the spark is eradicated, the fire will continue to re-start and damage the brain and other vital areas such as the immune system. Mercury is the underlying common denominator of all the problems from which these children suffer. Children diagnosed with autism suffer from acute mercury toxicity secondary to huge exposure while in utero (maternal amalgam load, dietary factors, maternal inoculations, Rhogam injections, etc.) and early on in life (vaccinations preserved with thimerosal, etc.). Adults diagnosed with Alzheimer's suffer from chronic, insidious mercury toxicity secondary to exposure over a long time (amalgam load, inhalation of mercury vapors, combustion of fossil fuels, dietary factors, etc.). By addressing and eliminating the mercury "spark", these secondary "fires" become far easier to manage clinically and the improvements realized from treatment of the resulting imbalances become easier to maintain. Mercury directly causes damage to the neuronal cell resulting in denudation of the neurofibrils. In addition, mercury results in secondary problems as discussed such as immuno-suppression, allowing for opportunistic infections, allergies, GI dysbiosis, etc. Addressing all other issues such as immuno-suppression in children with Autism without addressing the issue of mercury, is analogous to attempting to put out multiple fires without addressing the arsonist. The fire will keep re-igniting unless the "spark" is eliminated. It is the elimination of this "spark", i.e. mercury, for which we now have an easy and effective solution. Along with some supportive therapies, autism and certain other neurodegenerative diseases can be fully and permanently reversed. This is NOT a theory but rather, a protocol that has already been clinically validated and the evidence is irrefutable. The reason for some individuals to have severe damage from mercury where others do not have serious adverse neurological deficits extends due to various factors which include biological individuality and genetic predisposition. In addition, what type of toxicity exposure the individual was exposed to, was it inhaled, ingested, or exposed on their skin? What type of mercury exposure did the individual receive? Was it organic or inorganic mercury? If it was organic, was it ethyl mercury or methyl mercury? How frequent was the exposure to the source of toxicity? Was there a significant maternal load present prior to birth? Was the situation exacerbated by the mother being inoculated, or having Rhogam administration. How many administrations took place and over what period of time? What about the diet? How about the proximity to industrial sites, and exposure to combustion of fossil fuel? As you can see, the variables are extensive. But the treatment is essentially the same. The only difference is the extent of continuity of treatment. Slide 47 shows a newspaper article in the Charlotte Observer with a picture showing one of my patient's mother administering transdermal DMPS to her son's forearms. Slide 48 gives more information on metal toxicity and represents the focus of the majority of my post graduate medical career revolving around the issue of the effective clinical treatment of heavy metal toxicity.
The underlying common denominator in chronic neurodegenerative disease seems to be either decreasing vascular supply (less blood to the brain) or accumulation of heavy metals, specifically mercury. The inability of an individual to eliminate toxic metals, especially mercury, is directly related to the level of neurodegeneration experienced. In the young patient population suffering from Autism or Pervasive Developmental Delay, the vascular supply is not an issue. The underlying pathology of children with autism and the geriatric population with Alzheimer's is of the same etiology, specifically mercury toxicity. Both these patient populations suffer from the inability to excrete mercury as a result of a genetic predisposition resulting from the Apo E allele. This allele appears to be associated with the inability to get rid of mercury from the system. If these patient populations inhabited a complete mercury free environment, they would not have the problems associated with autism or Alzheimer's. When the mercury is successfully removed from their systems, these individuals begin to significantly improve due to a cessation of the destruction and denudation of the neurofibrils, as evidenced by steady improvement in cognitive function. Mercury is the "spark" that causes the "fires" of Autism as well as Alzheimer's. Autism is the result of high mercury exposure early in life versus Alzheimer's is a chronic accumulation of mercury over a life time. A doctor can treat ALL the "fires" but until the "spark" is removed, there is minimal hope of complete recovery with most improvements being transient at best. However, once the process of mercury removal has been effectively started, the damage is curtailed and full recovery becomes possible and enhanced by utilizing various additional therapies including nutrition, hyperbarics, etc.
Rashid A. Buttar, DO, FAAPM, FACAM, FAAIM Advanced Concepts in Medicine firstname.lastname@example.org
Full submission of testimony with supporting data and references to follow
"Announcement of a New Treatment Protocol for Autism Spectrum Disorders and other Neurological Impairments"
The International Hyperbaric Medical Association Foundation
Paul Harch, M.D. President
Before the Government Reform & Oversight Hearing --Subcommittee on Wellness & Human Rights
Entitled "Autism Spectrum Disorders: An Update of Federal Government Initiatives and Revolutionary New Treatments of Neurodevelopmental Diseases "
United States House of Representatives
May 6, 2004, 2:00PM
International Hyperbaric Medical Association Foundation
46 Draper Circle, Suite B Stafford, Virginia 22554-4754
Office: 540-720-4255 Fax: 540-720-2486
P. Harch MD May 6, 2004 Testimony - 2 - TESTIMONY OF PAUL G. HARCH, M.D
MAY 6, 2004
GOVERNMENT OVERSIGHT COMMITTEE
SUBCOMMITTEE ON HEALTH AFFAIRS
CHAIRMAN, DAN BURTON
Chairman Burton and distinguished members of the Subcommittee, thank you for the opportunity to present the findings of my research and practice on the hyperbaric oxygen therapy (HBOT) treatment of children with autism, autism spectrum disorders, and persistent developmental delay. These findings will hopefully be encouraging, and when coupled with the testimony of the other physicians, exciting. Together we would like to suggest a new approach to the acute treatment of the insults that predispose to these disorders as well as the delayed treatment when the disorder is well established. The key announcement today is about an evidence-based medicine study that will combine two treatments that have been found to be effective in treating autistic children mercury detoxification and hyperbaric oxygen. The IHMA Foundation is collaborating with the American Board of Clinical Metal Toxicology (ABCMT) under the supervision of the Oklahoma University Health Sciences Center on this revolutionary new treatment for autism. The Institutional Review Board (IRB) approved protocol will use transdermal DMPS chelation and hyperbaric oxygen. Transdermal DMPS, with absorption through the skin, has a number of advantages over oral, IV, or injected chelation which enhances its effectiveness. After several months on the transdermal chelator, hyperbaric oxygen treatments will be administered using the Neubauer-Harch dive protocol, and then after another time period has elapsed, the second set of HBOT treatments will be administered. The transdermal chelator will continue to be used until the next set of hyperbaric treatments is applied. It is expected that the combination of the two therapies will double the effectiveness of the chelator and allow the hyperbaric oxygen to cause permanent neural recovery. All patients enrolled in the study will have extensive before and after neurological scans and neuropsych testing performed by independent observers, and all will receive real treatment. After all, no placebo group is necessary when you know the outcome for untreated patients. By definition neither oxygen or the chelator can be a placebo since both have known effects as a drug. Rashid Buttar, DO, whom you just heard testify, developed this transdermal chelator and has had excellent success with the treatment of over 40 patients. Dr. Buttar is one of the Board members of the IHMA Foundation and also Vice Chairman of the ABCMT. Dr. Buttar's treatment has clear and demonstrable effects as we can all see here today. The older a child is, however, the more difficulty they have clearing their brain. Bob Nash, MD, Chairman of the ABCMT is a neurologist and certified in chelation and hyperbaric medicine. He explained that you often have to 'pound away' with chelation at patients for a long time because the neurons are stunned and do not have proper metabolism, so they cannot clear the heavy metals and cells cannot pick up the chelate. The addition, hyperbaric treatments kick start the neurons and 'light them up' so when the chelator is present it becomes easier to eliminate the heavy metals that are preventing the neuron's normal function. We expect this combination of therapies to shorten the time that these patients will have to be treated, returning them to more normal status more quickly, and also result in a more complete recovery than if they had each individual treatment by itself. Dr. Nash came to this conclusion when he examined the brain scans of several of my patients where I used a scan-dive-scan diagnostic to determine recoverable brain tissue. I will cover this evidence in just a moment. This treatment is available now on a limited basis. Due to collaboration between the IHMA Foundation, Oklahoma University Health Sciences Center, and the treating physicians who have developed this therapy, we expect it to be available in many locations across the nation later this year. After that we expect it to become the standard of care for all autistic children, nation-wide. Consider that Wisconsin is spending $30,000 in tax dollars on each autistic child per year right now in a special "training program," with a 3 year cost of $90,000 that still leaves children autistic at the end. The outcome is some behavioral improvement. Our treatment program is expected to cost about $20,000 and result in children who can function normally. We expect the states to adopt this protocol quickly and help fund the general treatment for these children once they see the results of this study. Amongst the nearly 400 brain injured patients that I have evaluated and treated in the past 15 years with HBOT and SPECT are approximately 20 children with Autism, Autism Spectrum Disorders, and Persistent Developmental Delay. When evaluated with the sequence of SPECT, one HBOT, repeat SPECT I have found that these children's' brain blood flow pattern improves and predicts permanent improvement with additional HBOT similar to the boxers, divers, and patients with other diagnoses. This change in blood flow after one HBOT is clearly demonstrated in the 8 year old Persistent Developmental Delay/Autism patient I presented to Chairman Regula and which I present again today. His three dimensional brain scans are seen in the attached Case 1. In addition, I have included two other cases, Cases 2 and 3. In all three cases you seen an improvement in brain blood flow and hence, metabolism, after one HBOT or a course of HBOT that was matched by an improvement in their autistic symptoms and behaviors. One child was able to be weaned from the powerful psychoactive drugs Ritalin and Prozac, and improve his emotional outbursts, autistic behavior, ability to play sports, and attend school. Another child whose autistic behavior was causing a significant emotional disturbance with inhibition of school performance in her six year old sister began to interact with her sister and family more normally with a resultant improvement in the sister and family unit. The third child experienced improvement in attention, understanding, sleep, vocabulary, inappropriate behavior, and emotional state. Unfortunately, HBOT did not "cure" any of these patients but all of them improved remarkably. This is partly due to the great delay in application of this therapy and the fact that I didn't know Dr. Buttar when I treated these patients. Many physicians who treat with the Neubauer-Harch low-pressure hyperbaric protocol and some form of chelation have reported that the combination works better than either of the two therapies alone. I firmly believe that the combination of these two therapies will yield tremendous results in these patients, especially in those children who develop normally only to have a deterioration to autism by 2-5 years of age. This approach is exactly what we will be following in our planned study through the IHMA Foundation's Treatment Registry. We're anxious to get started and can treat about 100 children for about $2 million. We are working to raise these funds now. In the past 40 years a steadily accumulating body of animal and human research has led to the conclusion that the appropriate application of hyperbaric oxygen therapy to human and animal disease is a vast untapped inexpensive health resource with limitless potential. This is no surprise when one considers that the basis for all human life is oxygen, the vast majority of human illnesses have as their root pathophysiology an absence of blood flow and oxygen to tissues, and the restoration of oxygen in all of these conditions makes common sense. Thanks to this research and literature, it now also makes good scientific sense. Unfortunately, for a variety of political non-scientific reasons these simple facts have been lost on the medical profession often leading to the deplorable situation where patients have to become their own doctor in order to treat themselves with this life-saving and life-improving therapy. To give you a few examples of the phenomenal potential of HBOT, I would like to quote from my testimony to Chairman Regula's House Appropriations Subcommittee on Labor, Health, Human Services, and Education last week, "the scientific literature suggests that the most powerful drug for treating the vast majority of acute injuries to the human body is one pressurized dose of oxygen to saturate the body's tissues. That dose appears to have a generic effect regardless of the cause of the injury or its location in the body (Harch PG. Generic Inhibitory Drug Effect of Hyperbaric Oxygen Therapy (HBOT) on Reperfusion Injury (RI). Eur J Neurol, 2000;7(Suppl 3):150)." The benefits of HBOT in acute injury are most demonstrable and dramatic in the treatment of acute brain injuries, collectively the condition which is responsible for the vast majority of disability and human suffering and the condition for which doctors have been traditionally "brainwashed" that there is no treatment. For example, HBOT successfully resuscitated over half of a group of 65 babies in England born not breathing who failed standard resuscitation. (Today, sadly, the only way one can procure this therapy is if you are a high priced newborn thoroughbred racehorse in Kentucky or Florida whose racing future is jeopardized by birth injury from lack of oxygen and blood flow.)
In humans this application has never advanced beyond the original scientific report in 1963. Similarly, the great majority of 336 acute coma and cardiac arrest patients in China and 170 near-hanging patients in Northern France were successfully resuscitated with a single high pressure HBOT. HBOT delivered shortly after these brain insults seemed to work identically to the manner in which it has worked all of these years in the classic accepted application of HBOT, decompression illness of divers (Harch PG. Late Treatment of Decompression Illness and Use of SPECT Brain Imaging. In: Treatment of Decompression Illness, 45th UHMS Workshop, Eds. RE Moon, PJ Sheffield, Undersea and Hyperbaric Medical Society, Kensington, MD. 1996). Specifically, it treats the common major underlying problem called reperfusion injury, or the injury that occurs once blood flow and oxygen are restored.
Another exciting example of the use of HBOT is the combination of hyperbaric oxygen therapy with radiation therapy in the treatment of cancer patients. It has been shown the kill ratio of cancer cells by radiation is directly proportional to the oxygen content of the tissue. What more obvious common sense method to increase the oxygen content of tumors than by the administration of hyperbaric oxygen therapy? So thought researchers 35 years ago in New Orleans where some of this seminal work was performed. In just the past three years doctors in the Far East have delivered radiation therapy to patients with one of the most deadly of all cancers, brain cancer, within 15 minutes of exit from a hyperbaric oxygen chamber and shown an approximately 50% increase in survival. Marlo Thomas, the famous actress and benefactor of St. Jude's Medical Center in Memphis, Tennessee recounted to Chairman Regula immediately before my testimony last week how the researchers at St. Jude's are desperately seeking and hope to develop new therapies for the treatment of brain cancer in children with the addition of a new $80 million brain cancer center.
As I mentioned to Chairman Regula, that treatment of yesterday is here today; it is hyperbaric oxygen therapy. Interestingly, and seemingly paradoxically, this same treatment that is potentially so effective acutely in combination with radiation therapy is by far the most effective therapy for treatment of the late effects of radiation therapy. In now 67 of 74 worldwide studies on HBOT in the treatment of radiation injury to multiple different areas and organs of the human body the results were strongly positive (Feldmeier JJ, Hampson NB. A Systematic Review of the Literature Reporting the Application of Hyperbaric Oxygen Prevention and Treatment of Delayed Radiation Injuries; An Evidence Based Approach. Undersea and Hyper Med, 2002;29(1):4-30. While we have evidence for the great potential of HBOT in acute injury my concern today is for the millions of individuals in the United States and hundreds of millions of individuals worldwide who suffer from chronic brain injury of all types. Given the information above about the nature of acute brain injury, namely, the deprivation of oxygen and blood flow, and the common underlying process of secondary injury in so many of these conditions, it is no surprise that many chronic conditions, especially of the brain, are characterized by low oxygenation and blood flow. In l990 I realized that we could treat this chronic injury by discovering that a lower dose of HBOT pioneered in South Florida by Dr. Richard Neubauer in stroke and multiple sclerosis patients could be successfully applied to, once again, the classic accepted condition for HBOT, decompression illness of divers. I found that divers who had failed standard United States Navy HBOT or divers who presented weeks to months after their diving accident with decompression illness of the brain could be permanently improved neurologically, cognitively, and emotionally and return to a functional high quality life. My partners, Drs. Keith Van Meter and Sheldon Gottlieb, simultaneously were proving this in brain injured boxers. With these two doctors I then extended the findings in divers to patients with now over 50 different neurological conditions using SPECT brain blood flow imaging before and after a single HBOT to predict which patients had injured brain tissue that could respond to a course of HBOT. This pattern of response first seen in a stroke patient of Dr. Neubauer's and then in the boxers and divers was yet another generic response to HBOT that I identified in the vast majority of the fifty additional diagnoses, including the first cerebral palsy case in North America (Harch PG, Gottlieb SF, Staab P, Van Meter KW. HMPAO SPECT Brain Imaging and Low Pressure HBOT in the Diagnosis and Treatment of Chronic Traumatic, Ischemic, Hypoxic, and Anoxic Encephalopathies. Undersea and Hyper Med, 1994;21(Suppl):30. In other words, if one HBOT could change the pattern of brain blood flow in a neurologically abnormal patient to a more normal pattern, this was evidence that that injured brain could positively and permanently respond to a course of HBOT. In summary, Chairman Burton, we have a treatment, right now, for autism, that combines these two proven therapies. It produces demonstrable results as you have seen today. We also have a treatment for acute and chronic brain injury that is so simple, giving oxygen, specifically hyperbaric oxygen, as to be astounding that is not more universally applied in the field of medicine. Given the research and experience to date and its potential application to autism I do not hesitate to tell you that HBOT will revolutionize the treatment of brain injury in the world.
Thank you for this opportunity.
Paul Harch, M.D., President
International Hyperbaric Medical Association
J. Gordon May 6, 2004 Testimony - 1 - Prepared for the Committee on Government Reform for the May 6th, 2004 Hearing "Autism Spectrum Disorders: An Update of Federal Government Initiatives and Revolutionary New Treatment of Neurodevelopmental Diseases"
Julie J. Gordon.
150 Custer Court
Green Bay, WI 54301-1243
Founder & Director of MUMS National Parent-To-Parent Network
Founding Member and Board member of The International Hyperbaric Medical Association
Parent of a 30 year old daughter with Cerebral Palsy & Autism
Before the Committee on Government Reform
United States House of Representatives
May 6, 2004
CONGRESSIONAL TESTIMONY OF JULIE J. GORDON
Dear Chairman Burton and distinguished members of the Committee, thank you for allowing me to testify and represent the parents of this nation who want to share with you the remarkable results of Hyperbaric Oxygen Therapy for their children with Autism and brain damage. When my daughter, Jessica, was born in 1973 her brain was damaged from loss of blood during delivery through a slit in the umbilical cord. She was born dead, resuscitated and given ice cold blood transfusions as was I. As her damaged brain swelled the seizures began. In those days babies like Jessica went to institutions, not home with their parents. In spite of the resistance from hospital staff, I chose to take her home. The Federal Law would not be passed for another two years even allowing a child like Jessica into the school system. We had many battles ahead of us and today I am fighting for the babies yet to be born so that they and their families are spared what we had to endure and are still enduring. I gave up my teaching career to care for her. When she was four years old I gave birth to healthy, gifted twin girls. Divorce is much higher in families with children with disabilities and only the strong marriages survive. Mine did not. The girls and I were forced to go on SSI, welfare, food stamps and Medicaid. It was frustrating and degrading to have two college degrees and to be living below the poverty level and accepting government help with no alternatives. Disabilities in a family are devastating not only emotionally, but financially which in turn makes more people dependent on the government. This all could have been prevented for our family for just $3. 58 an hour's worth of oxygen. Loss of blood is one of the non-approved conditions for treatment with Hyperbaric Oxygen Therapy (HBO). I strongly believe now that if she had been treated with HBO immediately, she may have gone home perfectly normal. Instead I was sent home with a seizuring, spastic, screaming infant with no referral for any therapy or for any support. In 1979, when Jessica was six years old and the twins were two, I started a small support group for parents whose children had disabilities. We shared our hopes and sorrows and most of all we supported each other and knew we were no longer alone. We discovered we had power too. When a mother, Donna, with a two year old son who was blind and needed leg surgery called us because the hospital wouldn't let parents stay overnight, we met with the hospital administration and had the policy changed. She slept on a cot in her son's room that night. We grew in strength and number. New mothers knew nothing about the services we did, so a newsletter "MUMS Matchmaker" was developed to get information out to those who couldn't attend meetings. Thousands of parents now had a voice to share their emotions, problems and helpful solutions. Milwaukee Children's hospital reestablished the Parent Rooms on each floor because of our editorial complaint in the MUMS newsletter. As parents of children with rare disorders joined, we established a matching service to link them with each other. Because of the uniqueness of this service, over the years MUMS grew to be international and now has over 19,300 members from 54 countries covering 3400 diagnoses. Over two thousand Professionals joined and refer parents to us for help. In 1995, through the exchange of newsletters from England, I discovered that 500 children with Cerebral Palsy in England were being treated with HBO and were improving. One article told about Linda Scotson's 16 year-old son who went from being blind, deaf and in a wheelchair; to seeing, hearing and riding a two-wheel bike no handed. This seemed to me to be impossible so I called Linda in England and she said she had a large chamber in her living room in which she treated him and other children and verified their improvements. After receiving more HBO information anonymously about people coming out of comas and "Idling neurons" becoming active in the brain using HBO, I decided to share this information with my Medical Board of Advisors and five parents to see what they thought. My Pediatric Neurosurgeon and two parents, Laurel & Diane, went to investigate Dr. Neubauer's clinic in Florida where he was treating off-label conditions. The parents each got 14 treatments for their daughters and saw amazing improvements. They were so excited when they returned that Laurel raised money and put a chamber in her home and Diane's husband tried to build one out of a propane tank.
Their experiences made me decided to publish an article about Hyperbaric Oxygen in our MUMS newsletter in 1997 and the response was an amazement to even me. You see when your child has brain damage the doctors tell you there is nothing that can be done. Hyperbaric Oxygen Therapy gave us hope - our only hope.
Naive parents willing to pay cash started knocking on the doors of hospitals with chambers only to be turned away. We were shocked! Parents in the Military on bases with huge multi-placed chambers were also turned away. Parents sent MUMS articles they found about HBOT and we developed a packet of information and started distributing it. Parents started going to England and Canada for treatments and shared their experiences more information for our HBO packet. With the increased demand for HBOT from parents, existing free-standing wound care clinics and new clinics started to treat our children. Parents and grandparents whose children had improved opened clinics. As parents reported back to MUMS of the existence of these HBO clinics we started a list of clinics to share with interested parents. MUMS became the clearinghouse for parents to find clinics and for clinics to get listed if they were willing to treat off-label. Parents from all over the world started contacting MUMS and sharing their experiences the first to be treated in Germany and Malaysia and France. A group of parents in South Africa bought a chamber and were treating their children and shared their testimonials. Presently we have 131 HBO free standing clinics listed that will treat off-label conditions. In addition in England there are 100 clinics and 11 in Scotland treating Multiple Sclerosis for free through a charitable trust and they have opened their doors to children with brain damage for a small fee. A letter to the editor in Exceptional Parent Magazine from two parents requested more information on HBOT. I wrote and the response with MUMS' address and phone numbers was published in the magazine so more parents called and letters poured in. The letter I had responded to turned out to be from Claudine Nadeau from Quebec and Debbie Nardone from Illinois. Debbie was a member of MUMS and met Claudine through the Internet. Debbie shared the information she had from the MUMS newsletter and the two of them decided to meet with their sons in England to get HBOT. When Claudine brought her twin sons, Michel and Matheau, back from England, Dr. Marois, their pediatric physiatrist, was amazed at their improvements. Claudine and he approached McGill University in Quebec to do a study. As a result, the McGill Pilot Study took place Oct 15 Dec. 15, 1998 in Montreal. The results were amazing considering the 25 children ages 3 to 8 years old with spastic diplegia Cerebral Palsy only got 20 treatments at 1.75 atmospheres. Results showed reduction in spasticity in hip adductors, hamstrings and ankle plantar flexors. Patellar tendon and Achilles tendon reflexes were found to be significantly reduced. It was reported that there was significant improvement in the children for walking and sitting as well as for knee walking. The study concluded that HBO improves function in children with spastic diplegia, Cerebral Palsy. Following the results of this study, a group of parents from Quebec, spearheaded by Annie Lachaud, organized a Parent Movement to further research on HBOT. Because of the pressure put on the Canadian government by these parents, 1.2 million dollars was allocated for another McGill study which included 111 children at three different locations. The study was completed in August 1999. As Dr. Paul Harch has stated, "The real story behind the McGill Pilot Trial is not the findings of the study, it is the story of a group of mothers organized and connected by the MUMS Network and Internet who became a force so powerful that they were able to overcome tremendous resistance and accomplish what a group of physicians were unable to achieve in over 50 years." Because of the studies and requests from Canadian parents more clinics opened in Canada. In 1999 a new HBO clinic with a 10 person multiplace chamber was opening in Coquitlam, British Columbia and offered me free treatments for Jessica when they called to get on our HBO clinic list. I had never really thought about getting her treatments because I couldn't afford them and I truly felt at age 25 years old it was too late. But how could I turn down this wonderful opportunity? Parents had shared the names of organizations that provide free airline travel to children for medical purposes and I contacted one and we were approved. Amy, a friend from Palm Springs flew with her 11 year-old son, Ari, who has severe Cerebral Palsy and Autism also and the four of us shared a hotel room. Our children each got 40 treatments with a protocol of 1.75 ata twice a day. We know now this was a dangerous protocol because 1.5 ata is safer and more effective, but we were all experimenting with our children and we followed the protocol used in England. During his second treatment, Ari's tight arm easily could be raised above his head. His speech became clearer and his legs more relaxed and his Autistic behaviors lessened. The noticeable changes in Jessica occurred after about the 20th HBO treatment. Her muscle tone became much more loose especially when she was in a relaxed state. Her posture in her wheelchair became straighter and her head control much better. She used both her hands together much more. She even lifted a towel off her tray with both hands to wipe her mouth off. She used to slide off the bench in the chamber, but now with her relaxed legs she could sit with ease and with only slight assistance from me. Her alertness and attention span increased. One technician noticed she seemed "more animated". She enjoyed having me read books to her which she never had the attention span to enjoy before. The sentences she spelled out on her communication board were more complicated as are the words and phrases and ideas she uses. She initiates conversations now instead of needing prompting. Prior to HBO Jessica could only make the "M" sound and say "Mama". Jessica has started to talk and can now say 5 words including saying her sister's name, "Abbie". She can say "Hi" and delights in hearing the new sounds come out of her mouth. Overall she just seems smarter and more alert and happier. Jessica was evaluated at Central Center in Madison, Wisconsin before and after her Hyperbaric Oxygen Treatments. Previous evaluations showed her getting more spastic. When stood Jessica's legs scissored (crossed severely )and she was up on her toes. After 61 HBO treatments her physical therapy report says, "Significant changes (+/-) in the following: hip extension (10° to -15° right) and (5° to -10° left), hip internal rotation (35° to 50° right and 35° to 55° left), left shoulder abduction (135° to 145°) and her right wrist extension (55° to 65°). Jessica also had an improvement in her hamstring flexibility on the left as evidenced by improved straight leg raises (45° to 55°). When placed in quadruped (on all fours), Jessica was able to weight bear on both hands with hands open. She was able to accept the weight more evenly on all four extremities and even began to weight shift back and forth with assistance. She had attempts at moving her legs and also advancing her left arm. During her previous admission (before HBO), Jessica had difficulty keeping the weight back over her hips and kept her hands more fisted and required maximal assistance so this was an improvement. Movement into tall kneeling also improved." Her improvements were documented! Now when I stand her, her legs are apart and her feet are flat on the floor. I only need to hold the back of her head for support. A recent report said her ankle flexibility improved 20%. In the Coquitlam clinic there were 30 children a day getting treatments. I met two children who had been seizuring all day long and both completely stopped with HBOT even though the parents had taken them off all medications. A seven year-old Canadian boy, Brett could walk, but had such low tone in his hands he could not even hold a crayon. After HBOT, his favorite thing to do was to color. A five year old French Canadian girl walked alone for the first time in the waiting room as we all applauded. Nineteen year old Adam from Texas not only got more relaxed and responsive, but his severe psoriasis almost disappeared! Two year old, Mitch, who was a shaken baby from Minnesota scooted off his blanket for the first time since his injury and stopped seizuring totally. In July 1999, Dr. Neubauer, a pioneer in treating off-label with HBO, had The First Symposium On Hyperbarics and The Brain Injured Child in Florida and parents came from all over. This gathering fueled our excitement. Listservs started and parents shared their children's improvements and others joined wanting to know more. At the symposium we met a man, Tom Fox, from Alabama who ran a free-standing Hyperbaric Wound Care clinic and he was so touched by what he saw, he offered five of us free treatments if we would come to Alabama. To his surprise a few weeks later we were all on his doorstep. While there I told Tom if he could bring a mobile chamber to Wisconsin, I would help him find interested parents to bring their children for treatments. For fear of having the FDA stop us, we parked the unit on an Indian Reservation outside of Green Bay. Because so many parents in Wisconsin were interested in HBOT we had no trouble finding willing parents. Billy's mother drove 1 ½ hours one way to get the treatments. Billy has a Chromosome 9;11 Balanced Translocation and is Autistic and had very crossed eyes. His mother, Lynette said because of his sensory issues, he would never wear a hood and she had trouble getting him to go in the chamber for the first treatment. After one treatment, Billy's eyes straightened and after seven treatments they were permanently straight. He became so much calmer and loved crawling in the chamber. Billy would try and put his own hood on even before we were at pressure. Another man from Oklahoma, Mike, bought a mobile chamber because he had a niece with Cerebral Palsy and a sister who had a stroke. He also brought his chamber to Wisconsin. Now Jessica and many more children in Wisconsin were able to get HBOT on a regular basis without having to travel. Jessica to date has had a total of 215 treatments and she is a totally different child. Another MUM, Sherri, who brings her son's companion dog once a year to demonstrate at Jessica's adult program called me and asked what I had done to Jessica. I asked her why. She said, "Well last year I saw Jessica and asked her a question three times before she answered by pointing to "yes". This year she drove up to me in her powerchair and asked how my dog was. This demonstrates the new Jessica. The most profound change in her is the lessening of her autistic behaviors. Her thought patterns are more mature and complex. She wishes she could get married and that she would like to "try" and drive a car. She initiates conversation, is so aware of her surroundings we have to be careful what we say in front of her, where before she was in her own little world. Her father wanted to make her a CD of music and I told him she never indicated an interest in music, but I would ask her. She spelled out, "Walking on Broken Glass", Sit Down, You're Rocking The Boat" and "Uptown Girl" I was astonished! She listens to her music CDs all the time which is more age appropriate. She can problem solve now. Recently she spelled out she wished we had an elevator so she could go down in the basement. Her sister just moved out into an upstairs apartment and when I told her I cannot show her the apartment because of the stairs, she asked me to make a video of it for her to see. She likes to watch "Sex In The City" (how normal do I want her to be? :>}) and reminds me a few minutes before 8 o'clock every night to turn on "Larry King Live". She never even watched TV before HBOT. She tells me when she has a headache, is sick or if her tray is dirty. She even laughed and called me stupid! Another new development which prior to HBOT she was unable to do is that Jessica has a job making personalized stationery and envelopes and brings home a paycheck ! She never had the interest or ability before. Throughout her years of schooling a constant goal that was never reached was for her to tell me what went on in school. Now she voluntarily tells me she went to the museum, or that they had "Take Your Daughters To Work Day". Her communication and social skills are becoming near normal thanks to HBOT. Although she has been G-tube fed for the last ten years she is eating more by mouth and even eats corn-on-the-cob without difficulty. Every parent fears for the future and worries who will take care of their child when they no longer can. With Jessica's new awareness and communication skills I feel more confident she will be able to communicate her needs and will better be able to fend for herself when I am gone. It is so amazing how the brain can improve after 25 years with Oxygen and a little pressure. I have gathered 100s of cases but I will present just a few, but please read the other documentation I have brought for your review: In 1998 a five year old little boy in Texas, Edgar Gonzalez, who was hit by a car and had a traumatic brain injury was in a coma for three weeks with a score of "7" on the Glasgow coma scale. A hyperbaric doctor in Galveston, Sally Robinson, tried Hyperbaric Oxygen treatments on him and he is now back to normal except for a lumbering gait when he walks! One of our MUMS in the Galveston study triggered by the success with Edgar told us her daughter's vision went from cortically blind to 20/20. Shortly after his daughter Rebecca's complicated birth and cardiac arrest for 35 minutes, Ed Nemeth of Sacramento, California and his wife were presented with the unspeakable, yet strongly suggested single choice for their first-born child: discontinue life support or allow their child to continue brain dead. Devoid of options the Nemeth's discontinued life support; Rebecca rallied and lived. Five years later through their indefatigable efforts the Nemeths found HBOT and after a short course of HBOT their daughter experienced a quantum leap in neuro-cognitive function and significantly improved movement and coordination. Ed is now involved with two hyperbaric clinics and funded the Second First Symposium On Hyperbarics and The Brain Injured Child in Florida because of his interest in furthering HBOT for children like his Rebecca. Shannon Kentiz of Wisconsin called me crying that her two year old daughter, Gracie who had Cytochrome-C-Reductase Disorder and was on life support. This is a very rare mitochondrial condition (there are 40 types) that destroys the brain and the doctors told her the five children they knew about all died by the age of 2 years. They were pressuring Shannon to remove the life support and she said she could not watch her baby die. Shannon was given no options. I explained to her that no one had tried Hyperbaric Oxygen Therapy on Mitochondrial Disorders, but maybe it was worth a try. Since she had nothing to lose, she brought her daughter to Florida by ambulance. Gracie was lethargic and blind and in a coma. After hyperbarics she is walking, pulling the pens out of her doctor's pockets and can see. Her mitochondrial disease is totally gone and they now think with more HBO she will be normal. I spoke with her ophthomoligist in Madison who was so amazed he is doing a study using HBO for visual problems. Carlos Ponte, Gracie's pediatrician was so impressed he has changed his career direction, has moved from Wisconsin to Florida and is studying to be the medical director of a Hyperbaric clinic there. Michelle Divino from Illinois has two children with Autism. Her son age 9 years was somewhat verbal before treatments, but echolalic (repeating what others said only), had obsessive behavior with self-stimulating behaviors as a norm. He would typically play obsessive games to amuse himself, screaming to vocalize his needs, and only used nouns to communicate. After 40 HBOT he properly uses pronouns, is using prepositions, conjunctions, and will repeat his sentences over and over until he is satisfied with how they sound. He has shown real emotion, and even told a lie! He is now able to tell what is wrong when he is upset. He says "good night" spontaneously. Once he said "Look at that green car, it's beautiful". without any prompting at all and said he a certain game he was playing. Her daughter is 2 and a half, nonverbal, and somewhat aloof showing very little interest in her mother before treatment, preferring her father. Her daily routine consisted of watching videos all day and "reading" her magazines and books. After the first few treatments her daughter said, "bye-bye" and "mama" and began to began to seek out her mother to play. She showed more interest in her siblings as well. Her interest in videos slowed down and she began playing in the sandbox which was taboo before HBOT. She began to run (which she was unable to do before HBOT) and attempted stairs one foot over the other versus one stair at a time. Overall she became more aware, less aloof and will look at her mother and smile when she says hello 2 out of 10 times versus not at all. One of our fathers whose son had a near-drowning episode while he was visiting his sister in California knew about Hyperbaric Oxygen Therapy before the incident. He told me he literally got down on his knees, crying and begging the doctors at Loma Linda to treat his son. They refused. Debbie, a MUM in Wisconsin, was pregnant with twins, and had her leg amputated because of flesh-eating bacteria. When this failed to stop the spread of the bacteria she was given HBOT which totally killed the bacteria. Why was HBOT not the treatment of choice before amputation? The twins were 24 weeks premature and both have Cerebral Palsy. Her other child has Achondroplasia dwarfism. I called a doctor that I heard from parents was treating children with Cerebral Palsy-sneaking them in the chamber. He told me he would treat children with brain injuries, but that I should not publish it. He said he was seeing the same improvements in the children that was documented in the MUMS' newsletters. He then told me that he had a 51 year old friend who had suffered a viral encephalopathy and had been in a coma for five weeks. All the tests they did on him, MRI, EEG, showed no brain function and that he was clinically dead. The ventilator was removed but he did not die. He told the family that before they made the final decision to stop feeding him, he wanted to put him in the chamber. After the Hyperbaric Oxygen Treatments his friend walked out of the hospital, not well, but of his own accord!! I asked him why he wasn't shouting this from the rooftops? He told me he would lose his job for treating off-label. What state is our medical system in that our government allocates millions of dollars for research each year, yet doctors are afraid to come forward with the truth about HBOT for fear of retribution? David Freels of Georgia has a 10 year old son Jimmy who has Cerebral Palsy. HBOT improved Jimmy tremendously so David asked his state Medicaid to pay for the treatments. When they refused he sued and won. He based his claim on the language of the EPSDT statue that states in paragraph (5) 139d(r) that States provide "such other necessary health care...treatment and other measures...to correct or ameliorate defects and physical and mental illnesses and conditions discovered by the screening services, whether or not such services are covered under the State plan." The state has appealed. Ga. Dept't of Cmty. Health v. Freels, 576 S. E. 2d (Ct. App. 2002). Held that the EPSDT statute required only that a treatment be necessary to correct or ameliorate physical or mental conditions, not that a treatment be an acceptable standard of medical practice. Finally I present you with the story of Kevin Fickle who I consider the poster child for Hyperbaric Oxygen therapy. Kevin Fickle of Slidell, Louisiana was 11 months old when a viral encephalopathy put him in a coma. He was on life support, had five infarcts to his brain and all his organs were shutting down. His doctor knew about HBO, but because of the off-label ban on using it for brain damage he had to wait until Kevin developed the typical meningitis sore on the back of his head eleven days later. This was the ticket he needed to justify use of the chamber for wound healing. After three treatments Kevin fought the ventilator and after ten he was crawling around the chamber. His parents are members of MUMS and update me with pictures periodically. The only side effect he still has is a speech delay otherwise he is a normal boy. If he had been able to be treated earlier his speech would probably not have been affected. His story was featured on Lifetime's Beyond Chance with Melissa Etheridge. http://www.musa.org/Stories/kevin_fickle.htm I get calls almost daily from parents with questions about HBOT. They cannot ask their doctors who have no training in this field. Dr. Harch, who is on the MUMS' Medical Advisory Board has been kind and dedicated enough to respond to many of them personally. He and I cannot keep up with the demand and there needs to be a better system for dissemination of information. Without studies we do not have the answers. We can only guess from our experiences and those of others. With our nation in an economic crisis we cannot afford to ignore the possibility of HBOT reducing not only the medical costs, but the excruciating, life-altering pain and suffering experienced by so many. The parent movement has taken on a life of its own. Desperate parents are going to continue to get HBOT for their children no matter what you decide today. Some are even talking about treating their children with scuba gear and 100% oxygen at the bottom of their swimming pools. We are crawling into chambers in the back of semis hidden on Indian reservations and in warehouses and having chambers installed in our homes. Parents are second mortgaging their homes and taking out huge unrepayable loans. Nothing can stop parents from getting HBOT for their children, but you can help us make it safe and available. We need studies to determine the safest and most efficatious protocol. The question is not whether Hyperbaric Oxygen Therapy works. The exciting question is what other conditions will Hyperbaric improve or cure. With your help, the testimony you have heard today could help revolutionize the medical industry and put hyperbaric oxygen as a treatment of first choice rather than a last resort. Infants born with severe brain damage could be sent home as normal babies. People involved in accidents suffering from traumatic brain injuries and those who have strokes could have the damage to their brains reversed or eliminated if treated immediately. You know in your heart, after what you have heard today, if a loved one of yours incurred brain damage you would be desperately looking for the closest hyperbaric chamber too.
Thank you so much for your valuable time.
Autism is treatable: hope that is real, treatments that heal.
Townsend Letter for Doctors and Patients; 10/1/2004; Reagan, Lisa
"My name is Michael Augerson. I'm autistic. Basically when you're autistic, you feel urges to do things that you really need to do. You can't stop yourself. Like you have taken a drug. You have no idea what others are talking about, because it doesn't make any sense to you. Others think of you as a freak, loon, or a retard.
"I was able to find a way to change. Some doctors have been able to find the problems and correct them. I have a special diet, take a lot of vitamins, stay away from chemicals and take medicine for my colon and an antifungal. For me, it's like I've become a new man (or should I say teen). I now have an ability to control myself. I can understand the plot of a book and movie. I can have friends without them teasing me. I've also changed physically. A year ago, I was shorter than my brother who is three years younger. Now I'm as tall as my mother. I feel as if I've been reborn. For the first time in 14 years, I feel normal. Other people don't see me as normal yet. I would like if they would treat me as an equal.
"I still have some problems and am willing to go through tests to find the answers. I think one day I might be able to succeed in not being autistic. It would be a dream come true for me and my family."
(Written by Michael, 14, in June 2004. Michael, whose parents were told he would be institutionalized, has healed through biomedical treatments and has been mainstreamed into a public school and is an honor roll student.)
When Michael was diagnosed by a neurologist with severe autism at age three, he did not recognize his mother, was highly aggressive, self-abusive and rarely slept. "Back then, in 1989, no one knew what autism was, much less how to treat it," explains Michael's mother Sara.
Back then, Sara was also told that her cravings for two to three cans of tuna fish a day were healthy for her pregnancy. These days, thousands of families are discovering successful biomedical treatments for autism and cans of tuna carry warning labels to pregnant mothers about possible mercury contamination.
The Augersons are one of thousands of families who have discovered successful treatments through their own pioneering efforts and through the Defeat Autism Now! (DAN!) protocol established by The Autism Research Institute, a San Diego-based nonprofit and world center for research and information that has tracked promising treatments for autism since 1967. ARI's database is the world's largest with more than 37,000 detailed case histories of autistic children from over 60 countries.
In 1964, when ARI's founder, Bernard Rimland, PhD, released his groundbreaking book Infantile Autism: The Syndrome and its Implications for a Neural Theory of Behavior, the current medical belief was that autism was caused by an unloving "refrigerator" mother and the appropriate medical treatment for autism was "for the mother to acknowledge her guilt, and disclose why she hated the child and wished it had never been born."
"The child, in so-called 'play therapy' was provided with a paper or clay image of a woman (his mother) and was encouraged to tear it to bits, thus expressing his hostility toward his mother, whom the psychotherapists were positive has caused his autism. There were also a few drugs that were also used with autistic children, but then, as now, the idea was not to treat the autism but to slow the children down enough to make life tolerable for those who must deal with them." (1)
Rimland's groundbreaking book on autism, inspired by the birth of his own autistic son Mark in 1956, exposed the lack of scientific evidence to support the "bad mother" cause of autism, won the 1964 Century Award, and attracted the attention of parents worldwide who contacted Rimland and shared with him their personal treatment successes with their own autistic children.
Blamed and shamed into accepting responsibility for their children's suffering by the medical model and its physician supporters in the 50's and 60's, mothers of autistic children were left with no guides outside of their own experience and intuition for discovering "treatments." And they were successful.
"Mothers of autistic children were extremely effective at identifying treatments that were helpful to their children. They were also very observant in detecting factors that caused their children to become worse.... It was very evident that there were a number of treatments, largely discovered by the parents of autistic children, that were much more effective than the drugs being used by the psychiatric establishment, and certainly much safer," (2) Rimland writes. Rimland went on to found the Autism Society of America in 1965 and was an early advocate of behavioral intervention known as ABA.
From the 60's to today, the rate of autism has exploded from 1 in 10,000 to 1 in 166, and a further 1 in 6 children is diagnosed with a developmental disorder, according to the Autism Alert released by the US Department of Health & Human Services (HHS), the Centers for Disease Control (CDC), and the American Academy of Pediatrics in February 2004. Autism is not a disease but a "condition," often characterized by a failure to bond, lack of social interaction, avoidance of eye-to-eye contact, difficulties in language development, and repetitive behaviors known as stimming (self-stimulation). Milder forms of autism are Asperger's Syndrome, PDD (Pervasive Developmental Disorder) and ADD/ADHD (Attention Deficit/Hyperactivity Disorder. Collectively they are known as Autism Spectrum Disorder (ASD).
Sara Augerson was a mother who found that diet changes, treatments for fungal infections, and parasites, were attributing to her son's slow, but obvious recovery from severe autism. "It was a literal fluke that we discovered in Singapore--when our entire family was being treated for parasites--that this medicine would help Michael's autism. Within hours of being treated he improved dramatically. Now I can tell by looking at him if he has another parasite in him."
Sara believes her son's recovery milestones over the years have been a Catch-22. "People don't believe that these kids get better. When Michael starts improving, people say he wasn't autistic to begin with. It was really hard to get anyone to listen to us. There was no methodology to follow. We were in a constant crisis and just running with it."
Answering the need for a protocol to guide parents and practitioners through the varied and growing number of successful treatments for autistic children, the ARI convened its first Defeat Autism Now! conference in 1995. During this think tank summit 30 physicians and scientists--seven were parents of autistic children--identified safe treatments with credible evidence of efficacy. "Once these efficacious treatments are identified, an attempt is made to find why they work, so their efficacy can be improved," said Rimland.
The name of the movement and its protocol, Defeat Autism Now! (DAN!) was in response "to the complacency and lack of urgency that were so evident at the National Institutes of Health, and at the medical schools, where research on the treatment of autism was virtually non-existent, except for experimental trials of various drugs designed for use on adults," testified Rimland to the US House Government Reform Subcommittee on Human Rights & Wellness in November 2003.
The theme of DAN! is that nutritional, metabolic and immunologic issues do exist in autism, and indeed are a central part of the problem, and that resolution or improvement of these issues is a prerequisite to success with other therapies such as sensory integration, speech therapy, behavior modification, and special education classes. DAN! believes that the autism epidemic has environmental causes that lead children with biochemical and immunologic vulnerabilities--probably genetic--to develop ASD.
"The experience of scientists and physicians within the DAN! movement leads us to the paradox that while the epidemic must spring from common causes, the treatment of children caught in the epidemic demands a thoughtful respect for their individuality. We wish to share with fellow scientists, clinicians, and family members, observation and data that may help our communities take on the responsibilities demanded by an epidemic: a capacity for prompt response to evolving information from direct experience with the situation," writes Rimland, and his DAN! co-founders Sidney M. Baker, MD and John Pangborn, PhD in a DAN! conference syllabus.
Michael, who no longer suffers from food and chemical allergies, continues to work with "DAN! doctor" Elizabeth Mumper, MD, an Associate Professor of Clinical Pediatrics and Family Medicine at the University of Virginia.
"Michael's problems seem mostly related to allergy/immunology problems with his greatest gains coming after being treated for yeast," said Mumper. "The second day after his first treatment with Sporanox, he began talking. The teachers had to revise his educational programs every three to six months because he was progressing so quickly. He does well when treated chronically with anti-fungals."
Unlike Sara Augerson, whose son Michael was born autistic and therefore is a rare case of Classic Autism (incidence of children who are born autistic are one in 10,000), Carolyn Yount watched her now four year-old son Chandler slowly deteriorate after each round of vaccines at their pediatrician's office. Chandler is a more commonly seen case of Regressive Autism. "At two months he had his first round of shots and he started having stomach problems. At four months he got another round of shots and took another turn for the worse. He would pull his legs up to his chest and scream constantly."
"Now in retrospect I realize my son's stomach was being torn up by the thimerosal. When we took him off of the regular dairy formula and put him on soy we saw a remarkable improvement, but still had the stomach issues. None of the many pediatricians we saw got what was going on with him. Then at 12 months he got the MMR vaccine and immediately he broke out in a rash and screamed for two days. At 20 months he was diagnosed with autism by a neurologist." Thimerosal is a mercury-derivative and preservative found in children's vaccines.
Yount and her family drove 10 hours from Alabama to Virginia to meet with Dr. Mumper in July 2002. "She told me that he was a very sick little boy and for the first time I saw all of him and he was pale as a ghost with horrendous circles under his eyes with this very distended abdomen.... I just broke down because I couldn't believe this happened right before my eyes and I could be in such denial," said Yount.
As part of the DAN! protocol, Mumper uses a number of techniques to "chelate" or pull the heavy toxic build-up from Chandler. Heavy metal toxicity is common in autistic children and is thought to be attributable to a genetically vulnerable child's inability to excrete metals resulting from multiple modern sources such as mercury dental amalgams, power plant emissions, seafood like tuna, and childhood vaccines. Mumper emphasizes that strengthening the body to detoxify itself is preferable, and preparing the gut for detoxification through chelation is mandatory. "Chelation is risky if the gut is not in good shape and even then the process requires constant monitoring," said Mumper. Michael Augerson has never required chelation, noted Mumper.
Yount warns parents that the DAN! diet can be "very hard for people who are used to eating out. It took us 10 months to really get the hang of the diet but now his tummy is no longer distended and his bowels are normal and he is sleeping. He takes supplements two and three times a day, as well as B12 injections twice a week. Within two weeks of starting chelation he began using the potty. Right now we have had 11 rounds of chelation in three months and he is finally talking to me.
"We have changed every aspect of who we were before. Now everything we eat is organic and we have a water filtration system in the house, organic sheets, mattresses, hardwood floors. Now we think about everything we used to do, with shock. We didn't realize before how toxic our world is," said Yount.
The DAN!-recommended biomedical treatments have been so successful that 700 families who have employed its guidelines and documented their progress from diagnosis to recovery will make their medical histories, videos and personal interviews available to mainstream media outlets through an "Autism Is Treatable" campaign scheduled to launch in October 2004.
DAN! conferences are held twice yearly around the country and serve to educate parents and practitioners and to present the most current scientific research and findings by researchers, clinicians, and of course, pioneering parents. While the DAN! protocol emphasizes rejecting "cookie-cutter" treatments, its scientists have identified "sub-groups" of autistic children that can help parents and practitioners ask questions like, "Is this child primarily toxic, virally infected, or is he/she mostly a gut-disordered child? What role has genetics played here?" According to Jaquelyn McCandless, MD, author of Children with Starving Brains: A Medical Treatment Guide for Autism Spectrum Disorder, "Most children are combinations of all of these and more."
McCandless, a board-certified neurologist and psychiatrist, began researching treatments for autism after her granddaughter was diagnosed in 1996. She has written her book in hopes of helping parents become educated and empowered to take action now for their children. While hundreds of physicians around the country have been trained in DAN! protocol, their waiting lists are long. McCandless knows that finding doctors who are educated enough to work with parents is one of the major obstacles to treatment and healing for autistic children.
But as McCandless points out in her book, and one glance at a DAN! conference syllabus will show, the autism epidemic is touching many people's lives, including physicians and scientists who, as parents and grandparents of autistic children, have combined the power of their own experience, intuition and professional training into insightful tools for pioneering treatments for their own afflicted loved ones.
"As a grandmother and psychiatrist, my passion to find answers made me impatient with psychiatry and behavioral medicine's head-in-the-sand attitude that autism is definitely genetic and thus incurable and untreatable except for early intervention and the use of behavior-controlling drugs," writes McCandless. "Many medical doctors still advise patients not to bother with special diets or vitamins and minerals.... One doctor insisted that if there was no evidence of mercury in the blood test then there was no point in pursuing the heavy metal issue further, not aware or interested in the fact that the presence of mercury, except for a very recent heavy exposure, will not show up on regular blood tests.
"To no avail I pointed out that many of the doctors and researchers who pursue 'new' approaches are parents or grandparents of children with autism and would not be trying these methods on their own kin if they thought they weren't safe and effective."
Obstacles to Accessibility
With history presenting over-whelming and consistent evidence that medical science takes decades to catch up with pioneering researchers like those at ARI and the practitioners of DAN! protocol, it is not a surprise to parents that the Food and Drug Administration's website pronounces their children hopelessly incurable and parents who believe otherwise are "desperate, easy targets for unproven therapies and sham products."
"Progress in the acceptance of useful medical interventions is painfully slow--it is not uncommon for a safe and effective treatment to be available for decades before it is widely implemented. A recent example is the use of small amounts of folic acid, a very safe B vitamin, as a means of preventing severe birth defects. It is estimated that over 25,000 cases of mental retardation could have been prevented in the US if widespread use of folic acid supplements had been recommended when the discovery was first announced," said Rimland.
In an open letter to the then FDA Commissioner Mark McClelland, MD, the ARI has requested that the government agency rescind its "grossly exaggerated and unjustifiably pessimistic," statements, to reveal the public input prior to the issuance of their policy, and to abstain from enforcing the policies which flow from these statements "until we, and our colleagues, as well as other members of the public have had an opportunity to present the information your agency has ignored."
FDA Public Affairs Specialist Susan Kruzan, pointed out that, "There are no approved treatments of any kind by the FDA for autism." Not even the commonly used pharmaceuticals Ritalin and Risperdal.
As part of an ongoing congressional investigation into the autism epidemic, oversight hearings are ongoing and held by Dan Burton (R-IN), Chairman of the U.S. House Government Reform Subcommittee on Human Rights & Wellness in November 2003 and May 2004. The congressional committee has heard from Rimland about the success of the DAN! and from other experts on groundbreaking new treatments that are effectively improving the medical condition of autistic children and adults.
"History teaches us that debilitating conditions like autism do not simply go away," states Chairman Burton, who is the grandfather of an autistic child. "I am encouraged that many of my colleagues in Congress, as well as our health officials, are finally starting to wake-up to this realization, and devote the necessary attention and resources to understand, and ultimately cure autism."
Rashid Buttar, DO, who is one of 190 US doctors board-certified in clinical metal toxicology, testified before the congressional committee on May 6, 2004 that he had stopped taking referrals for autistic children from pediatric neurologists in 1998, despite the success of his treatments because "the emotional component was overwhelming, just having to deal with the pain and frustration of the parents of these children."
Then on January 25, 1999, Buttar's son Abid Azam Ali Buttar was born and he became one of those frustrated parents as he watched his son slip away into the abyss of regressive autism. "The oceans of tears I cried and the hours I spent trying to figure out what was happening to my son are no different than that of any other parent in the same situation except that I am one of 190 US doctors board-certified in clinical metal toxicology ... when he would make eye contact with me his eyes would say, 'I know you can do it Dad.' The expression he would give me, just for an instant, would be that of a father encouraging his son. I thought, if this is metal-related, I should know how to fix this problem."
Buttar's pioneering treatments have led to the International Hyperbaric Medical Association and the American Board of Clinical Metal Toxicology collaborating under the supervision of the Oklahoma University Health Sciences for the study of a transdermal DMPS/Glutathione solution he has developed. Buttar has been invited to present his method to a second ARI think-tank on mercury detox in Fall 2004 (the first was held in February 2001).
"It has long been known that DMPS is the most efficacious way to chelate mercury, but it required IV administration, which made it very impractical to give multiple times to autistic children. His protocol has the solution applied to the inner aspect of the arms every other day, and this can go on for months," explains Buttar's colleague Kenneth Stoller, MD, Assistant Clinical Professor, Pediatrics, University of New Mexico, and the Medical Director of the School of Medicine, Hyperbaric Medical Center of New Mexico.
"There is a subset of the population that cannot clear certain heavy metals from their bodies, and in the case of mercury it causes a great deal of problems in the brain. If you did a hair analysis or urine analysis on these children you would not see mercury (as they can't clear it) until you start giving the DMPS. Once on the protocol, the mercury finally starts moving out of their bodies and then you see it in hair and urine. As the mercury leaves, the children become clinically better.
"Using a combination of hyperbaric oxygen therapy, which helps the mercury-stunned neurons come back on line, with the transdermal DMPS, seems to be the best for treating these children. This population subset is the proverbial 'canary in the coal mine'," said Stoller.
"When 31 children recover from a devastating disease by a simple transdermal treatment that detoxifies metals, then common sense dictates that perhaps metals are involved," states Dr. Bob Nash, the chairman of the American Board of Clinical Metal Toxicology (ABCMT), in regard to Dr. Buttar's treatment.
He adds, "Congress must create a National Metals Task Force by line item funding. This task force could be a resource to the Congress and also establish a Quick Reaction Capability that presently does not exist to address health problems. We can no longer continue to destroy our children's health even as an unintended consequence of a program that meant well. We need action today, not in 5 years."
The US government has finally begun to acknowledge the present and future public health implications of the autism epidemic by establishing the Interagency Autism Coordinating Committee (IACC). In addition, health agencies have begun to fund various autism-related research projects, as well as initiate training programs in order to better enable educators across the country who deal with the increasing incidences of developmental disorders within their student populations.
The Cost of Inaction, Action, and the Alternative?
Undertaking alternative treatments can mean exorbitant out-of-pocket costs for parents. "We spend $36 per round for chelation medicine every two weeks. We spend $250 a month on supplements. These are not covered by insurance. We do urine testing after every other round of chelation. The cost is $110 and is covered by insurance. We spend $100 a week on therapists for our in-home program. Other medicines for our son is $75 a month, partially covered by insurance. Obviously the organic/free range food that we eat is more costly than regular food. We must do this to avoid pesticides. Speech therapy and occupational therapy is provided by our local school system," said Carolyn Yount.
In a Congressional testimony in June 2002, Dr. Jeff Bradstreet, MD, founder of the International Child Development Resource Center and father of an autistic child, stated, "While no precise studies have attempted to look at the cost of correcting the biological problems associated with ASD, at least one report from England places the custodial costs of ASD in the range of $3 to 4 million per child per lifetime, with a societal cost that would likely be three times the individual cost. The cost of education, medical care, and therapies for behavioral and physical symptoms is staggering. Many of our families report having paid $50,000 per year to care for their child. The Individuals with Disabilities Education Act (IDEA) allows up to $35,000 a year for education of children with autism.
"Much of this burden is already being carried by federal and state programs that provide for disabled children. Custodial care for autism can exceed $100,000 a year. The public education system is literally swamped with children. Any survey of public educators will quickly reveal the suddenness and magnitude of the ASD problem. They lack the therapists and trained special educators to deal with the problem, so children with severe disorders receive nominal meaningful intervention. The further loss of potential future earnings from the ASD children who will likely not be self-supporting is impossibly large to calculate meaningfully. Many parents must quit working to care for the child as well. We, as a nation, are therefore paying and will continue to pay an enormous price for this epidemic.
"ICDRC estimates the minimal cost, in present value, of caring for those 420,000 existing children with autism at $1,260,000,000,000. So over the next 50 years, a little ($260 million is a little?) more than $1 trillion would be required if we stopped creating new cases today. Because autism is doubling every four years, this is likely an overly conservative estimate. The societal cost could easily be $3 to 4 trillion."
Currently Stoller and Buttar have met with the US Department of Human Health and Services regarding Medicare reimbursements for proven treatments. "We are prepared to petition Medicaid, with all the scientific literature, to place certain treatments on a list so state programs will stop telling parents to go away. It is true that there is the EPSDT statute which tells state programs to pay for any therapy that corrects or ameliorates, but that is just the law and no one follows the law unless a court forces them to do so," said Stoller.
Why Choose Alternative Biomedical Treatments?
In her book Children with Starving Brains, McCandless invites parents to visualize the choice of trying alternative treatments or the lack of conventional treatments, to standing on a pier while watching their child drown.
"You desperately look for help or a life preserver (a physician or treatments that might work). You find a rope tied to the pier (special diets, nutritional supplements, anti-fungal/anti-viral treatments, secretin, chelation for heavy metal toxicity--all of which you have learned are safe and help many of these children). However, authorities warn you not to use it because it has not been proven that the rope is strong enough (the treatment option has not received final approval by "authorities" who are waiting for reports of completed scientific studies appearing in peer-reviewed journals). Meanwhile your child is still drowning (exhibiting autistic/ASD symptoms).
If you were that parent on the pier you wouldn't wait for the completion of the double-blind clinical trials to assure you that the rope is strong enough. You would pick it up and throw it to your child. The worst that could happen is that the rope would break with your child closer to the pier! In real life, numerous parents, some of whom are physicians, have been finding that removing toxic metals is an effective treatment for their children. Parents of ASD children cannot afford to wait for approval of the guiding agencies appointed to protect our children's health to try treatment options these agencies consider "alternative medicine," particularly when the "experts" have nothing better to offer. This is especially true as the parents learn that the very actions they dutifully followed on the recom-mendations of these authoritative agencies may have been the cause of their child's autism, such as accepting the mandate that their newborn be vaccinated with unsafe levels of ethylmercury via the HepB vaccine."
"For the first time in his life my son is telling us that he loves us as much as we love him. In an untreated autistic child this is unheard of," said Carolyn Yount about her recovering autistic son Chandler. "For pediatricians to tell parents that there is nothing for them to do is wrong. There is so much we can do."
1. Rimland, Bernard. Infantile Autism: The Syndrome and its Implications for a Neural Theory of Behavior.
2. Rimland, Bernard. The History of the Defeat Autism Now Project, Biomedical Assessment Options for Children with Autism and Related Disorders, Autism Research Institute, 2002.
3. McCandless, Jacquelyn. Children with Starving Brains: A Medical Treatment Guide for Autism Spectrum Disorder. Bramble Books, 2003. Updated 2004.
COPYRIGHT 2004 The Townsend Letter Group
QUESTIONS AND ANSWERS ON AUTISM AND HBOT
Following are specific Q & A which have been asked. If you would like to input questions or variations to the posted answers, please do so by emailing email@example.com
This section bill be expanded as the questions continue to come in. You may find questions without answers below, it simply means I have not had the time to complete them. Check back later.
Can you tell me how long do the positive effects last (i am wondering whether they are long term or do they wane again?) They last, especially in the case of Austism. It is important to remember one of the principle reasons for the improvements you see is the development of new capillary growth which provides continuous oxygen to the injured neurons which are causing the problems. These capillaries also provide an exit route for toxins which may be stored in that area which will result in seeing improvements continue. Many times, 40 sessions will not be enough to develop the needed capillary growth. The only way to know for certain is to do more treatments.
how long have children with ASD been doing HBOT in terms years - are there any long term studies of outcomes?
Do the positives gained from the therapy continue post therapy? See Above Answer.
I have a severely autistic daughter; can’t imagine how I would handle her at (a treatment center), and wonder if she would ever wear the hood, but we would probably have to buy it ahead of time and get her used to it.
And I can’t imagine her going into the room without me. How do parents do this? And could she take her portable DVD player in the room?
I just can’t imagine this whole process with someone as severe as she is. Please tell me how this is done. I suspect we would have to get the most private room since she can be pretty noisy. She also gets self-injurious at times, which scares a lot of people, and she occasionally hits or bites others when she gets scared or frustrated. Now that I have painted the profile here, could she be helped at ---? Could you take a child like this?
Testimonials: (Names are not included unless a reference to a personal web page is included)
I figured it was about time for an update on Hunter. For those of you who don't know him, he's 7 years old and has for the most part been a non-responder to most interventions. He's been on TD DMPS for 10 months now with good results including more speech. We just got back from doing 40 sessions of HBOT in a portable-type chamber. We've seen great stools since he began, his color is finally a rosy pink instead of ghostly white, he's been sleeping wonderfully, and his speech just gets
better and better. His eye contact is the best I've ever seen it and he's wanting to interact with us all the time. Every day I'm seeing more and more new words and he seems so happy. This along with TD DMPS have been our #1 interventions so far and I just wanted to share.
We just finished 20 1 hour hbot sessions. Our ATEC scores prior to HBOT were: Isaiah-4 year old fully vaccinated son -- 91, Joshua 2 year old non-vaccinated son 41. After 20 hbot ATEC scores: Isaiah (4 year old) 63, and Joshua (2 year old) 33. Wow. I couldn't believe it. Isaiah still has moderate/severe autism, but he is making many gains in just 20 dives. Joshua looks more and more normal everyday. I doubt he would have a diagnosis anymore. Thank you guys. You guys were there for me when he regressed into autism at 5 1/2 months and told me how to help him. I will be forever grateful to you and God.
We just got back from doing 40 dives - two dives a day. We were in a multiperson chamber - the chamber had 4 seats and the kids sat in front of you on the floor. In this type of chamber - you pressurize for 15 minutes which can cause ear problems if you don't "clear" your ears while the chamber is pressurizing - usually takes about 15 minutes - you clear your ears by drinking water and yawning. Your ears have to clear - or you will cause damage (and feel pain). Where we were if you could not get your ears to clear - they would stop the pressurizing until you could clear them.
Then we put a clear plastic hood over our heads - it had a rubber seal at the neck. The oxygen was pumped into the hoods for an hour and then the hood came off and it was another 15 minutes de-pressurizing. I was amazed at how well the kids did. I've always known that I was a little clostrophobic but I didn't know how bad it was until I was in that chamber. In the chamber there was a TV outside a little portal window and the sound was pumped in. The kids were allowed to take in books and some rubber toys. With my son we have noticed longer sentences (he was verbal and considered high functioning) - he used more typical language including age appropriate slang. Asking lots of questions and I do mean lots! lol His eye contact is much better too. Just seems to be more with it. My son is 8 yo. There was a little boy there with CP who could barely walk and didn't use his right hand at all. By the end of the 40 dives - this little guy was running around chasing all the other boys and had total use of his right hand. It was awesome to see. His mom has already signed up to do 40 more dives in November. All the children showed improvements - I was told that I would probably see even more improvements in the next few months.