Michael J. Goldberg, M.D., F.A.A.P.
5620 WILBUR AVENUE, SUITE 318
TARZANA, CALIFORNIA 91356
TELEPHONE (818) 343 - 1010
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On the web: www.neuroimmunedr.com http://mat.org/
ADHD/ADD - LEARNING DISABILITIES
April 6, 2000
I am Dr. Michael Goldberg, a Fellow of the American Academy of Pediatrics and Director of the non-profit NIDS Medical Board and Research Institute. I wish to thank all of you for giving me the opportunity to speak here today and for taking the time to examine the urgency of this epidemic.
I have put together a packet of articles detailing my scientific hypothesis and current treatment philosophy. I suggest they be included in the record. I have also provided information on the emerging science and technology describing Neuro Immune Dysfunction whose common pathway is involved in many immune or autoimmune diseaseas including the development of the Autistic Syndrome. We finally have an understanding of how the brain interrelates with the endocrine and immune system. We are confident that we can apply this new understanding rapidly to evolve a treatment plan within the next six to twelve months, through an unprecedented blend of private enterprise and government-supported research.
The purpose of this hearing is to investigate why we have a large increase in this phenomenon that we have called autism. But to understand that, one must step back and look at the increased understanding and incidence of auto-immune disorders across-the-board, from the early/mid 1970’s, when I completed my medical training, to the present day. All one has to do is look at the medical literature to realize that nearly every disorder we have associated as immune connected, immune-mediated, defects in the immune system - lymphoma, multiple sclerosis, Alzheimer’s, lupus, Ulcerative colitis, rheumatoid disease, and even aging - have all become recognized as in part autoimmune diseases or illnesses where the friendly fire of our own bodies causes the damage as my colleague Dr. Galpin, an infectious disease and immunology authority, often is quoted to say.
If we are going to save this generation of children from a lifetime of suffering the incurable stigma of being diagnosed with autism and other cognitive delays, we must rapidly realize that all of these disorders result from a treatable rather than untreatable disease process. As written in the enclosed articles, and as a pure basic fact of science, it is medically impossible to have an epidemic of a genetic or developmental disorder. Further, while many have spoken of an “epidemic of autism,” the truth is: the disease process many of these children have is not autism (as taught to physicians 30 – 40 years ago).
If a child is born developmentally miswired, “damaged”, something happened in utero. But, a child cannot learn to speak and use language and then lose these abilities if the cause of their disorder is developmental, structural, etc. Such a child cannot respond to treatment and become a regular child once more, as has been the case in my practice over and over again, if the cause of their disorder is a “fixed” process, congenital or genetic disorder. It has been repeatedly apparent that 4, 5, 6 yr. old children are starting over where they left off at 18 months, 2 years of age. Parents who were told their children would never talk, could never be social, could never have feelings, now have children who are normal functioning or who are still struggling to catch up and get back to that fully normal functioning child, in either case these parents can see or are beginning to see a future for their child. It is my intent and hope in the time I have here, and through the articles I have submitted, to sow the realization that we are not talking about saving the next generation of children, but rather that we must focus our efforts on saving this generation of children before it is too late. The ramifications are enormous.
At the end of a research symposium in October 1997, one which brought together top researchers from around the country to discuss Alzheimer’s, adult dementias, social brain, and Autism/Pervasive Developmental Disorder (PDD), this statement was made: if a child developed normally during the first twelve, fifteen, eighteen months of life, developed any language/words, and then somehow went into the autistic spectrum, it was a 100 percent certainty that the process had to be immune/viral. IF a child developed normally the first 12, 15, 18 months of life and had NO words, 99% it was an immune / viral process, and no one there could rationalize any other possible mechanism.
While there is ongoing controversy regarding past brain biopsy findings and their implications, if any, to this generation of children, we do have NeuroSPECT Scans, which show reproducible, quantifiable blood flow in the brain. Blood flow corresponds directly to function. When NeuroSPECT Scans of children diagnosed as autistic/PDD have been correlated with MRI’s and CAT Scans, the combination consistently shows no pre-existing damage to the brain, but rather points toward an immune shutdown consistent with that found in adults with Chronic Fatigue Syndromes and other adult dementias and with children diagnosed as quiet ADD and mixed ADD.
I stumbled into the field of autism somewhat by accident. My wife had had Chronic Fatigue Syndrome for over ten years. Jokingly, my son asked me "Why are you sending Mom all over the country to doctors? Why don't you just fix her?" That began my journey into clinical research. It rapidly became apparent we were dealing with some component of the immune system, an autoimmune like reaction. During that time, as I was investigating all options for my wife, a few “Autistic” children were referred to my practice. Much to my surprise, these children had blood work comparable to that of my wife and other adults with this undiagnosed disorder, and to that of children I had been seeing diagnosed with quiet ADD and mixed ADD. I remember thinking then, “What could the immune system have to do with autism?”
Paralleling this, beginning in the 1980’s was the initially slow, now epidemic incidence of disorders in children labeled as Autism/PDD and the increase of reports of autoimmune diseases in the animal literature, of altered ecological balance, immune system abnormalities in various species. We either have to assume that this increase of disorders in the human population is mass-hysteria, mass-psychosis, schizophrenia, and/or behavioral developmental disorders in children or we must step back and realize that maybe we have a large number of adults and children suffering from a disease process that is affecting how their brain and nervous system functions, in ways that physicians had never understood (or had the technology to understand). I have family after family within my “new” practice in which there is a mother or father with Chronic Fatigue Syndrome, an older child with ADD/ADHD, and a younger child or two with Autism/PDD. As noted, unless we assume this is all random, there is unfortunately a logical connection between the above disorders and their rapid emergence as a crisis.
We are looking at what appears, supported by increasing data and reports in the literature, to be auto-immune, Neuro-immune disorders or what my associates and I have termed Neuro Immune Dysfunction Syndromes or NIDS. If you are an adult with an intelligent, developed brain or an older teenager, when this process attacks, you will likely end up being diagnosed with the illnesses known as Chronic Fatigue Syndrome, Adult ADHD, etc. If you are a younger child, five, six, seven, or eight years old when this process is triggered, with some cognitive, social and language capabilities already developed, you will likely develop what is called quiet ADD or mixed ADD. If you are twelve, fifteen, eighteen months old, however, when this process begins, you will have barely begun to develop cognitive, language, and social skills and you will wind up with what has been called Autism/PDD.
The good news is that this concept is supported by common sense medical logic. The bad news is that we must unify and focus efforts or we will continue to see more adults that are supposed to be paying taxes and earning a living, finding themselves on welfare, unable to function, unable to produce. Even graver is that if nothing changes, we are currently raising an entire generation of children to this fate.
There is hope. Research from many prominent institutions support the idea that the brain is pliable at least into adolescence, maybe into early adulthood. It has been my rewarding experience as a pediatrician to see five, eight, ten, and even a twelve year old boy who could not talk, begin to use language. Parents who were told their child would never be independent, never be able to earn a living, and who one day might have to be placed in an institution, have seen their children become top of their class academically. I have children within the practice scoring in the 97th, even the 99th percentile on California and Illinois state testing.
The potential multiple triggers for this illness, we are calling NIDS, will need many, many years of ongoing research to learn how multiple factors such as stress, viral, or environmental may play a role. The key is to focus treatment efforts, rapidly, effectively – NOW – to keep from losing an entire generation of children while the ultimate “answers” are still being investigated. We can use technology to accurately define “subgroups” of these children and adults now, setting up the possibility of new therapy approaches in as little as the next 6 – 8 months, rather than after years of further investigation and study. Technology exists to help these children and to help many of the adults out there to become productive individuals again. At this time, as noted in the enclosed articles, I have been using a combination of diet elimination, anti-viral therapy, anti-fungal therapy, and application of low-dose SSRI’s (Selective Serotonin Re-uptake Inhibitors), based on our NeuroSPECT findings, immune markers, and viral titers in these children. Thankfully, I have had many children return to normal and above-normal functioning, but this is not yet fast enough, simple enough, or perfect enough. This may be a holding approach thus far wherein balancing the many neurological immune regulating proteins known as cytokines and chemokines may in turn rebalance behavior itself. As many others are noting, I would propose there is a future for logical application of “alternative” medicines and combination treatment protocols with good pharmaceutically pure agents and medications.
In 1996, I was a speaker at the Autism Society of America Conference. Approximately 2000 parents and professionals gathered for this event. My wife, milling around, questioned me "Where are the doctors? The M.D.'s?" Sadly she had figured out the truth in a matter of minutes. The medical community had abandoned these children once they became labeled as "Autistic." These children were regarded as defective, mentally un-trainable, even retarded!
Sadly, with the label of autism, many children were not even given a simple blood test for anemia/iron deficiency (a simply-counteracted, possible cause of brain dysfunction). Reviewing case after case of children labeled as having Autism/PDD, I am horrified at how little has been done medically for these children, as they are not considered to be “normal.” Their pain, their misery, their "illness," goes essentially unrecognized. Many are though of as insensitive to pain, but how many are actually just “numb” to the pain that their brain/system is constantly in? Simple steps that could be taken, are not taken to help these children or their parents.
I have been fortunate to work with Dr Israel Mena and Dr. Bruce Miller, who helped show through NeuroSPECT Scans, that these children had a physiological dysfunction going on in their brains. For the majority, there was a decrease in blood flow and function of the temporal lobe of the brain consistent with that predicted by neuro anatomists. I have many, many more scans that show the same decrease in blood flow. I would shudder to think of what dysfunctions you might have if your brain had lack of blood flow in those areas. In fact, if one listens to an adult with Chronic Fatigue Syndrome, or the "typing" of a child unable speak, one can only begin to imagine how truly horrible this is.
Many of these children have a low number of Natural Killer (NK) cells, which are a more primitive immune system cell, responsible for clearing “radicals” in our body, clearing foreign cells / cancerous cells, and considered a strong marker for a healthy or stressed immune system. These cells, when low in number, are now linked to viral reactivation in many auto-immune illnesses, and low NK cells has become an extremely strong marker in a subgroup of these children with NIDS.
Another frequent finding is the likely presence of an active HHV-6 virus (a human herpes virus) or other related Herpes viruses in these children. Similar findings are also being reported for various adult auto-immune disorders and recently even the Center for Disease Control published an article focusing on our emerging knowledge of HHV-6 related disorders.
The issue of vaccines is an important one. Again, one must understand the problem in terms of the new altered immune state (part of the bigger picture), rather than necessarily the vaccines themselves. Most doctors would agree that not vaccinating in this country would be a disaster. As I remember the Academy of Pediatrics and the fights in the 70's over the DPT vaccine, in the end the statistics of children supposedly damaged by the vaccine were no more then the "natural" incidence in life or 1 in 300,000. In fact in England and Japan, where for a time the DPT vaccine was stopped, the incidence of pertussis (whooping cough) resulting in serious illness and death, far exceeded any possible “vaccine connection.” Likewise, in discussing the current “Autistic” / NIDS epidemic, while there may be a possible "triggering" factor with Rubella, Measles, "multiple" vaccines, one must understand this as only one of a possible combination of stresses causing dysfunction, within the concept of a preexisting "immune reactive” or "stressed" state. Vaccines (by themselves) remain an unlikely cause of Autism.
BUT injecting common sense, general awareness of health and appropriate "past" considerations of separations of vaccines, "stresses", choice of age, etc might save untold children potential reactions/disasters. Consistent with the question of whether there is a peculiar or unusual immune reactivity when a child is younger, waiting till a child is 3 or 4 could not be faulted, but with ongoing measles outbreaks occurring at times, it is not something easy to recommend routinely at this time. Infancy unfortunately represents a child's most vulnerable time to measles (but there is no real risk from rubella or mumps at that age).
Any injury or loss of a child that could have been prevented remains unacceptable. There is no way to adequately console the parent of a lost or damaged child. If “focused” correctly, we do have the ability to accelerate understanding and identification of potentially higher risk children. That would help immensely in considering the risks versus the gains of modifying vaccination schedules, diet advice, treatment choices, etc. We must work together with organized medicine and the pharmaceutical companies as allies to solve these questions, not as” adversaries, fighting to defend principles, which in the end we all believe in.
It has been my personal experience within the practice to literally have "high risk" children with "one foot in, one foot out" of the NIDS disorder, and prevent it from becoming full-blown Neuro immune dysfunction solely through use of "preventative" pediatrics. Via dietary eliminations, selective usage of antihistamines, "bacteriostatic" antibiotics (when indicated), aggressive allergy prevention and "health maintenance" providing a simple, preventative program to a seemingly-increasing number of families with high-risk factors for NIDS. While only an anecdotal observation, to date, NO family with whom I have instituted a preventative program for NIDS has had another "autistic spectrum" disorder child.
The bottom line is that these children have a disease, open to fascinating research on all its potential causes and triggers, but one that currently warrants and deserves immediate medical intervention. In my clinical practice, “miracles" seem to be happening routinely. One must realize, recoveries and significant cognitive improvements could not happen IF these children were truly born "defective" - thankfully, they were not. I have an increasing number of children who have been with me 2 or 3 years now and as they return to their regular pediatricians for their annual checkup, their pediatricians are seeing the children growing better and developing better, motor, body and brain wise. In a nice manner, while still not understanding this process (but smiling at the child they see before them), these pediatricians are advising the parents to continue therapy, as I continue to monitor medications appropriately.
A child I began treating at five is now in sixth grade, getting straight A's, was the Vice-President of his 5th grade class – not how most people view an autistic child. I have an increasingly large number of these children where "academics" are the least of anyone's worries for the child. Many are in regular if not honors classes and many are happy, well adjusted, indistinguishable from their peers. In reality these children are likely just the opposite of what this country and the world of medicine had come to think of them: as retarded, unable to develop fully, with some hope of compensation, but not real treatment or recovery (for one can not recover from a developmental disorder). Recovery and improvement in my patients, as previously mentioned and as explained in the attached articles, has been accomplished through a combined program of dietary elimination, anti-virals, anti-fungals, and low dose SSRI's. I have attempted to do this following good pediatric principles, while "combining" steps/therapies based on the emerging science of "Neuro-immune."
This past week a mom came in and told me her 5 yr. old child (who has been with me about 8 months now), said to her, "Mom do you want to pretend I can't talk? REMEMBER when I couldn't talk?" We have so misunderstood and misjudged these children. What harm are we doing to these children as a result?
If we can channel the technology that we have today and employ immune modulating agents, we could begin objective testing of new therapy protocols in as little as 6 – 8 months, with one (or more) related agents. Immune modulators, will give us the tools to regulate the Neuro-immune system as has never before been possible, help to create a "normal," essentially healthy state. A healthy immune system has the potential to "normalize" brain function, enabling the brain to turn back on and begin developing again.
If we can focus a unified effort to identify the specific immune markers (e.g. low natural killer cells, high alpha interferon’s, high or low cytokine / chemokine profiles) that will let us understand which patient is the most likely candidate for which immune agent, separate this “mixed” population of children into logical subgroups, allowing more rapid understanding of vaccine or other potential related factors, and if we can proceed with the linking of a country wide, potentially world wide network of NeuroSPECT centers, to our already existing database of NeuroSPECT scans, the immediate pay-off will be to have a chance at saving this generation of children.
There is good, solid science in the NIDS Hypothesis. It has been reviewed and verified by at least four pharmaceutical companies to date. We need to see the urgency of this situation: we are already spending approximately 13 billion dollars annually on Autism and related disorders and this figure is projected to be significantly more in the near future. In reality, if treated young enough, most of these children could still become healthy, productive members of society, with full, rich lives of their own. I would dare say, many of these “Autistic” children are in reality supposed to be this country’s "future" leaders, having starting off with that capability and background, and not as "defective" children (as had been previously thought). With the reported 263% increased incidence of autism in California, and a 500% increase in Florida, among other statistics, I cannot emphasize enough that we are truly losing a generation of children.
What may have often been presented to you as impossible or can’t happen, in reality, can happen, but to occur, we must approach this as it’s never been done before. In the normal course of medicine, with multi-million dollars of research, this is a slow evolution that will take an estimated five, ten years or longer to come together, to even begin to think of how can we treat this and deal with it. Within the NIDS Institute, our researchers, who are all heavily-credentialed, many are involved in current NIH and other activities and, with the NIDS Hypothesis, there is logic that says we can take this knowledge, these abilities, unify other researchers in institutions across the country, using technology, instead of being limited to colleagues or materials available within a given institution. We can literally pick-and-choose top people around this country, around this world to focus on this as the true crisis it has become. With that ability, we can look at applying these new therapies, new agents, within the next six months to a year at most. Instead of thinking about what are we going to do for the future, we can change this now.
I plead with you, Mr. Chairman and members of this Committee. These children are supposed to be a productive part of our country's future, not a health cost and burden. These children have the potential for full, productive, intelligent lives; contrary to the old idea, their genetics are not the determining factor. A child can NOT develop normally, develop some language and lose it all except in a disease process. We can apply good sound science and logic to help solve this crisis NOW. Unless we act NOW, we will continue to lose this generation of affected children, and will potentially watch the "bankrupting" of our current education and social system. Today's ill children cannot wait for the "normal" path of academic science to catch up (it has begun to move in the right direction, but all too slowly). We must leap forward in a way/model never done in medicine before. I am extremely fortunate to have three healthy children and one grandchild. I selfishly want the rest of my future grandchildren, all of yours and others out there, to have the same chance.
Michael J. Goldberg, M.D., F.A.A.P.
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