DEFEAT AUTISM NOW! (DAN!) MEETINGS, 2002
by NOHA Honorary Member Christine Pangborn, wife of NOHA Professional Advisory Board Member Jon Pangborn, PhD. Jon and Chris have two children, Bob (born in 1967) and Janet ( born in 1970). Soon after Bob’s birth, they realized that something was terribly wrong with their son. After years of wandering in the medical wilderness and a whole gamut of special ed programs, Jon decided that he should look into the biochemistry himself. Working with Dr. Philpott, in Oklahoma City, the project mutated into "Bionostics, Inc.," the consulting business that they jointly own and operate. Jon is a founder and active with DAN! and with the Autism Research Institute in San Diego, California, whose director, Bernard Rimland, PhD, has stated, "Dr. Pangborn . . . may very well have studied more biochemical workups of autistic patients than anyone else on Earth." Chris’ autism role is mainly editing Jon’s publications and searching for relevant research materials on-line and in libraries.
The first DAN! conference of 2002 was held in Boston, Massachusetts, on May 9-11, 2002. The West Coast Conference will be in San Diego, at the Town and Country Inn, October 24-27, 2002. If you or someone you know would like to attend the San Diego conference, the contact person is Maureen McDonnell, RN, 609-466-4291, in New Jersey.
DAN! is the product of a 1995 meeting in a Dallas Airport hotel room. At this meeting, called by NOHA Honorary Member Bernard Rimland of the Autism Research Institute in San Diego, experts from around the world pooled their efforts in a "brainstorming" session. Some were practicing physicians; some were medical researchers. Many were (and are) parents with a personal interest in battling this disease. The focus of the meeting was:
(1) What biochemical and immunologic causes are probable?
(2) What strategies could be found that will at least mitigate autism?
In 1995, the conventional assumption was very much that autism was an unsolvable closed box, and that treatment consisted mainly of training and education. The DAN! group was not willing to accept such an edict, and their efforts have put some pretty big holes in the "closed box."
From that initial meeting of about 30 people, the group and the meetings have grown to the present state: two annual meetings, each with attendance of 1200 or more. The growth is a bittersweet situation: on the good side, the DAN! strategies do help many autistics. On the bad side, the incidence of autism is vastly increasing. Parents struggling with their child’s diagnosis, physicians and other health care professionals with increasing autistic patient loads, teachers, grandparents, and interested people from the community all come to DAN! meetings to see what they can learn. Most say that they learn a great deal—from the speakers, from the vendors, and from each other. In spite of the meetings’ size, they are in many respects family reunions—both joys and setbacks can be shared with people who understand.
As with all DAN! Conferences, audiotapes are available from InstaTape of Coeur d’Alene, Idaho: 1-800-NOW-TAPE. The price is $12 per tape, with each session available as a package. Each single tape gives one speaker and the Q/A session following his/her talk. The format of the Boston Conference was typical of DAN!, and I have highlighted its sessions.
On the first day, there was a General Session for everyone:
Opening speakers were NOHA Professional Advisory Board Member Jon Pangborn, PhD, and NOHA Honorary Member Sidney Baker, MD. They talked about "Choosing the Best Treatment Priorities for Your Child." Since autistics are individuals, one size does not fit all. In fact, since "autism" is a behavioral diagnosis, not all autistics have the same underlying disease. Both speakers tried to give some guidance for figuring out what strategies might be helpful, and which things to try first. Many problems with digestion show up in these children, including "gut dysbiosis" (abnormal gut flora). Often their nutrition status is extremely poor and they have great difficulty detoxifying toxins, which come from outside, and even the normal products of our metabolism, which must be eliminated for us to maintain our health. The immune systems of these autism syndrome children can also have been injured in many ways.
Barbara Loe Fisher, a parent, talked about "Vaccines and Neuroimmune Dysfunction." Mrs. Fisher is the parent of a child who is now severely disabled (not autistic) following routine childhood immunizations. She discussed safety precautions: For instance, do NOT give a vaccine to a child who has a cold.
Mark Blaxill spoke on "The Sad State of Epidemiological Research in Autism." He proved that many if not most of our assumptions and public information about the incidence of this disease are inaccurate and misleading. It’s hard to make statistics interesting; Mr. Blaxill’s talk was fascinating.
Andrew Stoll, MD, and Paul Hardy, MD, talked about "The Omega-3 Autism Connection." The essential omega-3 fatty acids are very important in neurological development. Autistics often have abnormal levels of these fatty acids, for instance, low levels of omega-3s and, at the same time, high levels of saturated fats, which they are unable to digest properly.
Timothy Buie, MD, is a gastroenterologist from Massachusetts General. He spoke on "Clinical Findings and Treatment Outcomes Concerning GI Issues in Children with Autism: One Clinic’s Experience." Abdominal pain, diarrhea and/or constipation are very common in autistics, and have often been dismissed as coincidence. Dr. Buie made the point that they are important and should be aggressively investigated and treated.
Amy Holmes, MD, is a pediatrician who followed a hunch to an interesting conclusion. She collected baby hair from autistic children—the child’s first haircut—and had the hair tested for mercury. In comparison with baby hair from non-autistic children, there was much LESS mercury in the hair samples from the autistic children—another indication that autistics have lessened ability to excrete or get rid of heavy metal toxics.
Andrew Wakefield, MD, spoke on "The Investigation and Management of Gastrointestinal Disease in Children with Autism." Dr. Wakefield, a British gastroenterologist, pioneered in this field. He has slides it hurts to look at—showing GI lesions seen when scoping autistic children. Some of these lesions are positive for measles virus from the MMR vaccine.
On the second day of the conference, three sessions ran concurrently. They were the parent forum plus both introductory and advanced practitioner training sessions:
Leadoff speaker was Karyn Seroussi. She is a parent, whose autistic son became vastly improved when he was put on a gluten-free, casein-free diet, in other words, a diet eliminating all the grains that contain gluten and all milk and cheese, which contain casein. She and Lisa Lewis write a newsletter, Autism Network for Dietary Intervention, (PO Box 335, Penninton, NJ 08534) to inform and support families who are following a GFCF diet. Her talk was on "Dietary Interventions and Other Biological Treatments for Autism."
Ken Bock, MD, spoke on "A Practical Integrative Approach to Autism Spectrum Disorders." Dr. Bock is a practicing physician in Rhinebeck, NY and is a long-term DAN! contributor.
Jane El-Dahr, MD, spoke on "The Thimerosal Concern and Treatment for Mercury Toxicity." Dr. El-Dahr is a faculty member at Tulane University Medical School. Thimerosal (better known to some of us as merthiolate, a topical antiseptic containing an organic form of mercury) was used for several years as a preservative in routine immunizations, such as DPT (diphtheria-pertussis-tetanus) and RhoGAM given to Rh-negative mothers. It is one of autism’s "hot button" topics, because a large number of autistic children had onset of symptoms immediately following immunizations.
Paul Shattock spoke on "Minimizing Incidence and Decreasing Symptoms." Mr. Shattock is a British pharmacist and a parent, who has cajoled, pushed, and browbeaten the medical establishment, repeatedly hitting them over the head with facts. He is particularly active in Europe, where blaming the parent still isn’t stamped out.
Woody McGinnis, MD, spoke on "Physical Health in Autism." Dr. McGinnis is both a parent and a practitioner, now doing research full time. Compassion is Woody’s middle name.
Introductory Practitioner Training
This session is always for medical practitioners who treat autistic patients. It provides both practical advice and the scientific underpinnings of the DAN! paradigm. The object of the session is to teach doctors some of the strategies that seem to help many of the various subcategories of autism. It also introduces them to the science, so that they are better able to withstand criticism from insurance companies and others who insist that "there’s nothing you can do—treating autistics is a waste of time and money."
Sidney Baker, MD, opened the session with "An Overview of Basic Strategies." Dr. Baker, a former director of the Gesell Institute in Connecticut, is one of the founders of DAN! He is noted for his clear insights that cause complicated ideas to suddenly make sense.
Paul Shattock, with "Environmental Factors as Triggers for Autism," explained where autistics come from—and gave perspective to the autism epidemic. This will be familiar to many NOHA members, expressed by the old saw "Heredity loads the gun; the environment pulls the trigger."
Paul Hardy, MD, spoke on "Implementing the DAN! Protocol: The Rewards of Basic Scientific Thinking in Clinical Practice". The "DAN! Protocol" is the whole group of amelioration strategies endorsed by the DAN! Group. It is also the shorthand title of Biomedical Assessment Options for Children with Autism and Related Problems, by Jon Pangborn and Sidney Baker, which is available from the Autism Research Institute, San Diego, and is the heavily referenced paperback book describing the biochemistry, the laboratory testing, and the workings of treatment strategies.
Jeff Bradstreet, MD, talked about "A Review of Published Literature Supporting the Biological Treatments for Autism." He is both a parent and director of an autism center in Palm Bay, Florida.
Ken Bock, MD, spoke to this group about "Immunology in the Context of a Comprehensive Approach to Autism." Dr. Bock is an active, long-term DAN! physician in Rhinebeck, NY.
The third concurrent session was the Advanced Practitioner Training. This session is open to medical practitioners who have previously attended the "Intro" session above, at a previous meeting, and was opened to parents with advanced interests.
Leadoff speaker was Karl Reichelt, MD, PhD, from Norway. He spoke on "Genetic, Neurotransmitter, and Dietary Interactions in Autism." Dr. Reichelt has done pioneering work finding unusual and harmful peptides in the urine of autistics. This work underlies dietary strategies, particularly the removal of casein and gluten-containing foods from the diet, which is helpful for many autistics.
Walter Herlihy, PhD, was the second speaker. He spoke on "Bioprofiling in Autism: Implications for Treatment." One of the major hurdles for anyone treating an autistic child is to figure out which treatment to give which child. Dr. Herlihy, head of Repligen Corporation, the manufacturer of Secretin, presented his researches on this point. Secretin is a hormone, normally produced in the intestine, which stimulates the pancreas to produce the digestive enzyme chymotrypsin—often low in autistics.
Rosemary Waring, PhD, spoke on "Transsulfuration in Autism." Detoxification of many of the new manmade chemicals that we are spewing into our environment involves adding to the toxins the sulfur part from the molecules of certain amino acids (Transsulphuration). Dr. Waring has worked for many years on the very basic problems of what goes wrong in the metabolism of many autistics—what is the mechanism by which autistic individuals are harmed by factors that don’t harm most people?
NOHA Professional Advisory Board Member William Walsh, PhD, spoke on "Metallothionein Promotion Therapy in Autism." Like Dr. Waring’s work, Dr. Walsh’s is also founded in the chemistry that goes awry in autistics—what happens, or doesn’t happen, to make this individual the way he/she is? Often, in red blood cell tests, copper is found to be elevated relative to zinc. The abnormal elevation of this ratio can result in serious metabolic problems. Why does this happen? Dr. Walsh feels that a good place to look is at deficiency of metallothionein, a protein that contains residues of a sulfur-containing amino acid. Metallothionein is known to control and inhibit excess gastrointestinal uptake of copper.
NOHA Professional Advisory Board Member Jon Pangborn, PhD, spoke on "Metabolic Differentiation and Physiological Facets of Autism." Dr. Pangborn is a DAN! founder, and is very interested in peeling away the layers of apparent "causes" of autism, to try to find the root biochemical fault(s). He is one of the developers of now-available "dipeptidylpeptidase IV (DPPIV)" enzyme for mopping up residual peptides from casein (and gluten, gliadin) containing foods in the diet.
Jerry Kartzinel, MD, spoke on "It’s Alimentary, My Dear Watson!" Dr. Kartzinel is a practicing physician who treats autistic children, with understanding and a sense of humor. He provided the parents and clinicians with a wealth of clinical and treatment insights.
Two free bonus workshops were available to parents. One was a seminar on mothers’ health and well being. The other was a seminar, by Carol Wester, RN, of Hopewell Associates, on strategies for adult and teen autistics.
There was one big difference between this meeting and previous ones. That difference was the number of parents who came up to us and said, "My child is better!" We don’t have a cure for autism; every treatment strategy doesn’t work for every child; some children don’t benefit a lot from the things we know now. Those who do benefit still have a long way to go. But, we are starting to see progress—in seven short years since the start of DAN!
Maureen McDonnell and her staff, Wendy Young and Joanne Sheehan, arranged a smoothly-running successful meeting—again! Thanks to them all, and their volunteers, for a great job. Thanks also to the exhibitors, many of them onboard from the beginning, who provide support, products and services, and their own caring and knowledgeable inputs to the meeting.
Article from NOHA NEWS, Vol. XXVII, No. 4, Fall 2002, pages 4-6.