Guest guest Posted March 17, 2003 Report Share Posted March 17, 2003 http://www.redflagsweekly.com/mead/2003_mar17.html March 17, 2003 THROUGH A GLASS DARKLY By Tory and George Mead George W. Mead and his wife Tory are the parents of two children, Eleanor and William, who was born in May 1998. George is an attorney who at one time practiced medical malpractice defense (defending doctors and hospitals). Tory is a writer and an advocate for special needs children. They live in Portland, Oregon. * * * * * " For now we see through a glass, darkly; but then face to face: now I know in part; but then shall I know even as also I am known. " I Corinthians There is a Starbucks in our neighborhood that we sometimes visit to take our minds off our son’s medical condition. On our last visit, there was a plastic donation box for children stricken with autism, and a little plaque that read, " Autism strikes one child in every 5,000. " I ordered my double-latte and thought for a minute. Then I pulled out a red pen and deliberately defaced the sign, writing: " In Oregon, autism strikes one child in 150! " Two years ago, shortly before his second birthday, our son William went to his doctor’s office and received a standard set of " catch-up " shots, several of which contained a mercury-based preservative, thimerosal, which is 49% ethyl mercury by weight. Since that day, our lives have been profoundly changed in a way that none of us could have anticipated. During the following summer William suffered from constant diarrhea, unexplained bumps and welts, reduced speech, bloating, binge eating, bloody lesions, " croup attacks, " and lost interaction and eye contact. These conditions progressed into rocking, teeth grinding, eye squinting, spinning, hand flapping, gross motor problems, and a total loss of language. Twenty weeks after his shots, William, then two years old, was diagnosed with " regressive autism, " perhaps the most devastating disorder a toddler can suffer. But this is not a story of grief, it is one of hope. Through a combination of medical and educational treatments, our son has made great strides. He is talking, attending Montessori school with an aide. He falls squarely in the development range of a three-year-old. He is speaking six-word sentences, is potty-training, singing nursery songs, and drinking from a cup. He can read 15 words, and is learning more. He shows every sign of making slow but steady progress toward recovery. Although it will be a long and arduous process, we have one thing denied generations of parents before us: we have hope. With each passing day, the hopelessness of regressive autism is being challenged and overcome. When the Going Gets Tough In the summer of 2001 we were losing the child we knew and loved. William, who was a nine-pound healthy baby at birth, was losing weight each day. Over the next several months William become progressively more withdrawn. He was unresponsive, and would sit at the bottom of the stairs in the corner, laughing at nothing. Like many parents, we began our journey by having our son’s hearing checked. We were told there was good news and bad news. The good news was that William’s hearing was fine. The bad news was that we would need to go to the Oregon Health Sciences University (OHSU) autism clinic. Until that day, we had never heard of autism. We believe in a cause-and-effect universe. We did not believe that our formerly normal child could be afflicted with a terrible psychiatric condition – without an identified cause. Science can clone pets and splice the human gene; science should be able to tell us what was happening to our child. Our family had to know what caused William’s regression. We had to look autism in the face and learn why it had struck our son. One of the doctors at the hearing clinic mentioned that some autistic children respond well to a casein- and gluten-free diet. We couldn’t believe what we were being told. Could this mysterious psychiatric disorder be remedied by a change in diet? We went home and put William on a diet free from all dairy and all gluten (wheat, rye, spelt, oats, and barley). Within three days his eye contact improved. Within seven days his bowel movements improved, and within three weeks his self-stimulatory behaviors (stims) had dropped by about half. It was clear to us that there was a cause-and-effect impact. We started looking for more answers. The Battle of Autism: Finding the Root Causes To live with autism is to do battle. When we took William to the public education specialists, we were told, " Autism is a life-long disabling disease for which there is no cure. " At his Early Intervention assessment, William was tested with an IQ of 55 and severe language apraxia, an inability to understand or respond to words. At the Autism Clinic, William was ranked smack in the middle of the DSM-IV psychiatric diagnosis of typical " late-onset " autism, in which normal children lose the ability to communicate and interact socially. The Early Intervention experts told us that we might have to institutionalize our son. Shortly after our demoralizing experience with Early Intervention, we attended a DAN! biomedical conference in Portland. The Defeat Autism Now! (DAN!) movement started with a group of doctors and parents, led by Dr. Bernard Rimland of the Autism Research Institute in San Diego. Dr. Rimland’s research showed that there was a medical component to autism. The DAN! Conference focused on biomedical treatments for autistic children and the amazing progress being reported by parents across the country. After this conference, we met a truly courageous physician who had been thinking outside the box for years. He offered to take William as a patient, and our world began to change. Our new doctor ordered laboratory tests of William’s hair, urine, and blood. From these tests, we learned that something was terribly wrong with William’s internal chemistry. While William’s earlier doctors had simply told us that he had a mysterious and incurable psychiatric disorder, we now realized that something very physical and very abnormal was going on inside him. He had seven times the reference range for mercury. He had an immune dysfunction and his body was devouring his nervous tissue. He had little blood plasma – IgG or IgA. He had terrible microbial infections from yeast and Clostridia in his stomach and his intestines were permeable. Most children with regressive autism are medically ill: they suffer from abnormal conditions that can be treated medically. We began reading more research. Based on our pediatrician’s recommendation, we flew William to the Pfieffer Clinic in Illinois for more advanced metabolic testing. Recent studies by this Clinic, led by Dr. Bill Walsh, indicated that 95% of affected children show significant deficiencies of metallathionein (MT). MT is a protein that, along with glutathione, is responsible for removing toxins, such as mercury, from the body. Many autistic children have reduced levels of MT. Whether that is genetic or the result of some environmental insult is still unclear. The MIND Institute at the University of California at Davis has found that America’s autism epidemic is genuine. Genetics do not cause regressive autism. There may be a genetic susceptibility within a child, such as an autoimmune issue in the family tree, but the regression is environmentally triggered. All over the world medical scientists are improving their understanding of autism. There is enormous potential for using medical treatments to improve the lives of autistic children. Shaping an Appropriate Treatment Program By that point we had enough medical evidence to begin work on William’s recovery. We found a logical, science-based way to fight, and to hope, in the midst of despair. Gradually, we formed a team of supportive, forward-thinking doctors to help us with William’s medical care. With each round of tests we came one step closer to an answer. We moved William onto a high-protein, low-carbohydrate diet – a " yeast-free " diet based on gluten- and casein-free foods. Medical tests showed that William had a suppressed immune system. He had yeast and fungal infections. We started him on vitamin and nutritional supplements: vitamin A, cod liver oil, zinc (for seizures), Super Nu-Thera, vitamin B, selenium, omega-three fatty acids, magnesium, acidophilus probiotics, and finally glycoproteins. They all helped him. We tried removing mercury and heavy metals from his system through a process called chelation. We discovered several interventions that were to prove dramatic in William’s recovery. We used Vancomycin, and later Flagyl, to kill the intestinal bugs that had been plaguing him. We supplemented this with Saccharomyces boulardii, yeast that kills yeasts and Clostridia. The AIDS community has used it for years. We used glycoproteins, which are complex sugars. All of these interventions helped improve William’s health and facilitate his recovery. We also removed allergens from William’s environment. We organized a " healthy home: " ripped up carpets, checked for mold and gas, and installed air filters and water filters. We purchased organic foods to decrease his intake of pesticides. We tried to ensure that his foods were antibiotic- and hormone-free, with no preservatives or dyes. We began using only the most natural cleansers, hygiene products, and hypoallergenic bedding products. We began a home-based Applied Behavioral Analysis (ABA) education program and added speech therapy, occupational therapy, and auditory integration therapy to his schedule. Over time we noticed several clear indications of recovery. William began to live in the present. He responded to his name and his interest in the world around him increased. He became more interactive and began to demonstrate imaginative play. Gradually, his sensory issues began to improve. He began to recover some of his early motor milestones, and to walk normally. His vision improved. William is regaining speech and his cognitive scores are improving as he continues to make slow but steady progress. Massachusetts General Hospital: Developing a Medical Protocol for Autism We recently added a new chapter to our two-year search for medical answers. In November 2002, a group of parents in Oregon, along with the Northwest Autism Foundation and the Autism Research Institute, raised $450,000 to fund a study in which Harvard University and Massachusetts General Hospital will collaborate in developing a medical protocol for the treatment of regressive autism. The Harvard-Mass General study is remarkable. It is the first major study being conducted to establish a medical basis for treating autism. Within the first few months Harvard University and Massachusetts General Hospital have already made significant medical progress in treating autistic children. Three months into the study, in January 2003, we flew William across the country to Mass General to be biopsied by their top pediatric gastroenterologists. Early findings from the study show that more than half of the children with autism have treatable gastrointestinal problems. For two days we fed William soup broths and diuretics, preparing him for a gastrointestinal endoscopy. With his medical history of chronic diarrhea and severe food allergies, we needed to see what was happening in his stomach and gut. The results of William’s biopsy were not shocking for our family, but may be to many in the medical community, which still views regressive autism as a hopeless, life-long disability. William was diagnosed with " nodular lymphoid hyperplasia, " an intestinal inflammation affecting the lymph nodes. This finding is consistent with inflammatory injury to the intestines, and is a clear indication that William had an adverse biomedical reaction to a foreign environmental agent or toxin. They say that a picture is worth a thousand words. Pictures of William’s ulcerated lower intestine answered many questions for us. This finding explains how a child could eat all the time and suffer from malabsorption. It explains the development of severe food allergies to inflammatory agents such as milk and wheat. It suggests how ethyl mercury might cause damage and create a porous intestine. Looking at pictures of our son’s lower intestine, it seems very clear to us that William has a severe intestinal disease. While some autistic children’s stomachs look like Swiss cheese, William’s inflammation is mild and his lymph nodes are soft and healing. Our efforts to care for our son’s digestive tract have been successful. William’s lab results were also dramatic. His stomach pH is extremely low. Without the proper stomach acid, the pancreas doesn’t function to produce enzymes to help the body digest foods. William is missing key enzymes that he needs to digest certain food products. He also has low levels of the amino acids that excrete heavy metals. We learned that William has low secretin, too low for his pancreas to function normally. He is missing several key enzymes: lipase (which digests fat) and amylase (which digests carbohydrates). This information is vital in shaping his treatment options. The Mass General Hospital team is successfully treating autistic children by replacing enzymes and probiotics suspected to be deficient. Left untreated, these gastrointestinal problems will continue to cause increased neurological problems and exacerbate other symptoms of autism. Autistic children will continue to suffer and to regress without prompt and proper treatment. Timely and Appropriate Treatment: Giving the Children a Chance to Recover Children with regressive autism need to have a thorough medical evaluation to determine what treatments are appropriate. Not all children’s conditions are the same, but it is clear that many children have medical problems that need prompt attention. There is no question in our minds that our son has a limited time for recovery. The fact that, in general, the medical profession, school systems, and insurance companies are doing very little to help these children is one of the darkest sides of our society. It is an epidemic of denial. Nearly 40% of all families with regressive autism believe their child’s condition was triggered by vaccines. Most families realize that they have only a few precious years to recover their injured sons and daughters. Parents of newly diagnosed children need to know they don’t have to " reinvent the wheel. " Meet and talk with other families. Don’t lose hope. Don’t believe that autism is just a mental illness. Investigate the role vaccines may have played. Get good medical tests and examinations from supportive professionals. Shape your own treatment program based on good, independent science. When William was three, we were told that he might never talk and that we should ultimately investigate medication to sedate him and institutionalize him for his long-term care. Today, William has over 350 words. He can say, " I want more juice, please, " " I want to go outside, " " I love you and see you later. " He plays with his sister, and he fights with her too. We have made great sacrifices and incurred great costs in the two years since William was diagnosed but we have never lost hope. We have returned to William the gifts of health and speech – and those gifts are priceless. Gettingwell- / Vitamins, Herbs, Aminos, etc. To , e-mail to: Gettingwell- Or, go to our group site: Gettingwell Web Hosting - establish your business online Quote Link to comment Share on other sites More sharing options...
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