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Last Updated: 11/20/2017
 

 Article of Interest - Autism

Light at the End of the Tunnel

A Story About Hope And Recovery And Autism
by George and Tory Mead
For more articles on disabilities and special ed visit www.bridges4kids.org

Here are the tears of things: mortality touches the heart - Virgil


Part 1

Anyone who has lived through the horror of watching a loved child fade slowly, in shades of gray, into a ghost, knows the devastation of autism.

In September of 2000, in the early morning hours, we lay awake, staring in the dark. "I want you to take as much video of William as you can," Tory said.

"Why?" I asked, knowing the answer.

"Because we are losing him."

Indeed, as each day progressed we appeared to be losing another small piece of the child we knew and loved. What was left was a living, breathing shell of the laughing interactive child we knew. It appeared that within a few weeks, nothing would be left.

This is not a story of grief, but of hope and recovery. To anyone who is lying awake, wondering what the future holds, know one thing: there is hope.

With every day, new discoveries are being made about the cause and treatment of neuro-behavioral disorders previously thought "incurable" and "life-long afflictions." The few health care providers, who were treating the children as biomedical patients and justifiably offered cautious opinions about the outlook for children with spectrum disorders, are now openly referring to dramatic "recovery" for a percentage of the children, and significant improvement for many, if not most, children.

The first step towards recovery is to discard the traditional concept of "autism" as an architectural (meaning inherent-in-the-brain structure), and as a psychiatric disorder under the Diagnostic and Statistical Manual of Psychiatric disorders (DSM4). These diagnoses see autism and "spectrum disorders" as hopeless, and caused by some mysterious genetic factor. The fact that most, if not all, late onset autism occurs in the depths of the childhood vaccine schedule is seen as entirely coincidental. The fact the majority of the children suffer from extraordinary metabolic, intestinal, immune and allergic syndromes is seen, again, as a coincidence.

Recent developments in medicine clearly show that, with biomedical intervention and early aggressive educational therapies, children can and do make dramatic progress toward achieving their full potential, often fully recovering. Now, in changing the paradigm, what was once viewed as an absolutely hopeless affliction, is now being seen by a small group of educated health care providers as a complex metabolic system breakdown. By treating each system, by rebuilding immunity, and addressing the bodyís metal metabolism issues, gradual change and improvement is possible.

It is essential not to lose hope or purpose. It is also essential to rely heavily on what structure of faith or Higher Power you look to, for the will to carry out the job ahead of you. We have called this ordeal over the last two years "falling down the rabbit hole" and "life in war time". Both metaphors aptly describe the initial sense of confusion and unreality that accompany the early diagnosis.

WILLIAM

We, of course, feel William, along with his sister, are the most beautiful children on earth. William was a model for Pottery Barn Kidsš . Williamís childhood health was essentially normal for the first two years of his life; with the exception that he had what we were told was "recurrent bronchylitis" and recurrent ear infections. These conditions, which were characterized as "normal" for kids, and "what the kids are going through right now," resulting in William having 15 courses of antibiotics by the time he was 18 months old.

Following his two-year vaccinations, Williamís health appeared to sharply decline. He began to have rampant diarrhea (giardia, we were told), inexplicable sores on his back and chest ( flea bites, we were told) and he gradually lost weight. He developed what we later learned were "self-stimulatory behaviors," or "stims." He was rocking, twirling; toe- walking, clenching his teeth, squinting and grimacing. He would stand in the corner for hours, laughing to himself.

WHERE WE BEGAN

Like many families, our introduction to autism came via a hearing test. During the summer of 2000, William gradually grew unresponsive, unwilling or unable to play with his peers, and focused on a few small toys. Contrary to stereotype, however, he was, and remains, a warm and loving child. Late that summer, his teachers recommended a hearing test, and in October we took him to Oregon Health Sciences University. A specialist told us that Williamís hearing was good, but that he would need to be evaluated at the "autism clinic." We remember our heads swimming and a cold sense of dread falling on us at the words "autism clinic." We asked the specialist if William would be able to fall in love, if he would experience emotions like empathy and sympathy. Her only answer was: "thatís a good question".

THE DIET

In passing, one of the therapists at OHSU mentioned that some of the children "responded well" to casein and gluten free diets.

It seemed odd to us at the time that diet would play a part in a neuro-behavioral disorder. How much and why, have been among the most incredible revelations in this journey. As we set out in the late afternoon, after the evaluation, we felt a terrible sense of loneliness, isolation and grief. There seemed to be no answers to this problem, and little if any hope of finding them.

The next day we started the diet. We removed every kind of wheat , rye, spelt, barley or oat product from our house. Many weeks would go by before we had identified all of the products containing gluten. We discarded all dairy products. As we went forward, we discovered landmines in even the most "innocent "foods. Processed sugar, for instance (not a good idea in the first place ) contains trace amounts of gluten as a drying and smoothing agent. Almost all commercial spices contain gluten as a smoothing agent. We threw out and gave away garbage bags full of food and spices.

To our great surprise, Williamís eye contact improved within three days. His bowel movements, which had been terrible for months, solidified in ten days. His self- stimulatory behavior decreased within a month. We knew that something, which is an "organic brain disorder," would not be responding to diet. By six months on the diet, William made up 21 months cognitively, but still had scattered deficits.

In late November of 2000, the Northwest Autism Foundation held the first "OASIS" conference. This was the first conference of its kind in Oregon, and among the first on the West Coast. The conference was free, and focused on the subject of biomedical treatment of autism-related disorders. We decided Tory should attend. She returned, carrying a bankerís box full of books and literature, and supplements.

We have spent the subsequent year and a half reading, searching the Internet. Contrary to what you will hear from "mainstream" healthcare providers that the Internet is full of quackery, it is the most valuable tool available to the parent of the newly diagnosed child. It is a link with parents and brave health care providers. Unfortunately, "mainstream" doctors have not been very supportive or helpful. Fortunately, we found a pediatrician who, for many years, has thought outside the box on issues of vaccination and childcare and he referred us to a doctor who has been bravely practicing "alternative medicine" for many years.
A Story Of Hope And Recovery

Part Two

We decided to have William tested and this is what turned up:

Seven times the allowable reference range for mercury (the reference range is 1-3, William had 22)
Myelin basic protein antibodies (Williamís immune system was attacking his own brain tissue)
Immune dysfunction
Yeast (Candida) overgrowth
Elevated Measles titer
Dramatically low Magnesium and Zinc
Elevated Copper
Extremely low IGg antibodies (plasma)
Malnutrition


All of these findings are "classic" markers for the autistic child. In children with ADHD/ADD or Pervasive Development Disorder-Not Otherwise Specified ( PDD-NOS) the clinical findings may be less dramatic. They are, nonetheless, likely to be present in one degree or another. Recent findings have demonstrated deficiencies in essential metabolic processes in 99% of children on the spectrum (all neurobehavioral disorders). Despite these findings, very few clinicians have even bothered to ask why the autistic children seem to have these dramatic and similar lab presentations.

OCKEMíS RAZOR

William of Ockem was an English medieval scientist who first observed that, in weighing competing causes for a scientific phenomenon, the hypothesis with the least amount of variables was usually the correct one. He described cutting off extraneous theories and ultimately arriving at the core solution. Put another way, the scientific theory, which has multiple factors, is less likely to be truly causative than a theory, which has, at its root, one simple explanation. This process has been called "Ockemís Razor." Thus, in analyzing any scientific phenomenon, it may be of value to look for the solution that has the least amount of variables.

In the case of autism spectrum, recent developments suggest a simple theory: a group of children are predisposed, either genetically or through environmental insult, with a lack of defense mechanisms to deal with heavy metals and other environmental insults, in particular mercury. All but one of the childhood vaccines until recently contained a preservative known as Thimerosal, which is 49% mercury, by weight. Thimerosal has been listed for years as a pesticide with the EPA. Mercury is the second most toxic substance on the planet after Uranium. The children were exposed via the vaccine schedule to 237.5 mcg . This amount greatly exceeds the EPA allowable amount.

Recent studies by the Pfeiffer Clinic, led by Dr. Bill Walsh, indicate that 99% of affected children show significant deficiencies of Metallathionein (MT). MT is a protein, along with glutathione, responsible for detoxification, especially mercury. It is also the principle transporter of zinc throughout the body. MT is present in the gut and in the blood brain barrier. A number of studies have been conducted on genetically altered mice, whose MT factor has been removed. These studies are significant in many different respects. Perhaps, most significant is the inability of these mice to process heavy metals and the complete deterioration of their immune response.

The good news is that there appears to be the possibility of restoring the MT system. This therapy, along with enzymes, and glycoproteins, has shown dramatic effect in reversing the effects of the exposure and to improve immune functioning.

In short, it appears that some children have a predisposition to reduced levels of MT. Whether this is genetic or the result of some intrauterine insult is still unclear. What is clear is that, despite representations to the contrary, both industry and the government have known for years that thimerosal is extraordinarily toxic. As the controversy continues more light will be shed on the role of industry and government in covering up this information and in seeking accountability. As the late Supreme Court Justice Potter Stewart said, "sunlight is the best disinfectant".

WILLIAMíS TREATMENT
The Gut
Piece by piece, we began to treat each of the issues, peeling away the skin of the onion. First, we had to get the gut "in order." The conventional wisdom is that any serious effort in treating the mercury or immune issues should begin with the gut. Unfortunately, many of the gut issues are difficult to resolve without removing the mercury and getting the immune system intact. A leaky swollen gut cannot effectively remove heavy metals. Similarly, a compromised immune system cannot effectively combat serious gut bugs. Given the persistence of the "bugs" (like Clostridia Difficile and Candida Albicans) it is unlikely you will get complete resolution of the issues right away. We placed William on anti-fungals ( Diflucan, Ketokonazole, Nizoral, and Nystatin) We also placed William on Yeast Control, grapefruit seed extract, and garlic oil. No one treatment is completely effective. The most important aspect of treating gut bugs is rotating the treatment.

We also use probiotics. These are beneficial microbes, which combat overgrowth of "bad" bugs. Although it is somewhat controversial, using Sacchromyces Boulardi, a form of yeast, which excretes toxins to other yeasts, has been reported as effective. The trick is not to use it exclusively for a long period of time.

Most important, yeast and gut bugs will respond very favorably if you starve them. Indeed, it appears that the most effective long-term solution to killing gut bugs is to address the diet. For William, this meant that, in addition to limiting Casein and Gluten, William is on a high protein, low carbohydrate diet. We avoid potatoes, white rice, all sugar, fruit juices and dried fruit. We have chicken, beef, beans (green, pinto, black, garbanzo, white and all legumes). We also have started to use alternative flours such as Amaranth, Quinoa and Tapioca. These excellent flours are bean, not grain flours and are extremely high in amino acids and protein. Finally, we have substituted Stevia for sweetener. Stevia is an herb from South America, which has been used for centuries. It is many tens of times more sweet than sugar (a little goes a long way!) and is not metabolized as sugar.

A final note on diet. One good signal your child may be suffering from yeast is a craving for sweets or carbohydrates. If they throw fits because they are not getting fries, or if they have tantrums because they are not getting a fruit punch drink, rest assured, it is because they are, in the words of the street "Jonesing" for some sugar. The yeast is telling them it needs to be fed, and it is making them feel uncomfortable. Anyone who has tried quitting cigarettes has had a pretty good taste of this experience.

Finally, we have supplemented with a concentrated fish protein which has been used very effectively to heal gut lesions and decubitus ulcers. As the yeast is removed from the gut, the fish protein promotes healing and growth of new intestinal tissue.


Part Three

There has been a lot written about yeast or Candida overgrowth. Less has been written about yeast die-off or "Herxheimerís Reaction." Ironically, the "die-off" is the most visible, lasting and unpleasant manifestation of treating the gut. It is also the best signal you have nailed the problem on the head. First discovered by Dr. Herxheimer in connection with studies involving syphilis, of all things, it was observed that symptoms worsened significantly with treatment. Many microbes or single celled animals, when they die, release their toxins into the system. In many cases it is the toxin, and not the microbe itself, that causes the illness. Although yeast causes gut deterioration ( like English Ivy destroying a brick wall), it is the toxin Gliotoxin, which is the cause of many immune and behavioral problems.

Yeast, as any beer drinker will tell you, is also the main mechanism for converting sugar to alcohol. Many sufferers of yeast report a drunken or foggy feeling. This is not surprising because yeast produces alcohol, which goes straight into the blood.

Gliotoxin, which has been studied largely in connection with organ transplantation, is known for its extraordinary immune suppression properties. It is also known to attack the central nervous system and to cause premature cell death. It is, in short, a very bad actor, which has not been very well studied. Yeast is one of the main causes of final system breakdown and ultimately death in AIDS patients. Animals injected with concentrated gliotoxins suffer seizures and can die.

When you start treating for yeast or clostridia, these toxins will be released into the childís system, through a leaky gut. These can cause problems such as aggravated behavior, diarrhea, drunkenness and withdrawal symptoms. These are good signs. Herxheimerís can vary from a few days to upwards of several weeks. Do not be discouraged! You are on the right track!.

It is possible to treat the symptoms of Herxheimerís, often with fairly dramatic results. Studies have shown that gliotoxins attack the central nervous system. There is also evidence that Vitamin C , combined with either Alka Seltzer Gold‚ or Tri Salts ( a mixture of calcium carbonate, sodium bicarbonate and potassium carbonate) seems to be a very effective way of neutralizing the gliotoxins and preventing acidosis of the blood. We have seen William calm down within a matter of two to three minutes after getting 250 mg of Vitamin C mixed with Tri Salts (bicarb) or Alka Seltzer Gold‚ Although it is also controversial, sauna, or hypothermia, also seems to help with die-off reactions. Lots of water to flush the system is also a good idea.

Chelation

Perhaps no other single therapy, with the possible exception of intravenous gamma globulin (IVIG), is as controversial, and filled with dread as chelation. In short, chelation is the process of pulling heavy metals out of the system using chemical compounds. The term chelation comes from the Greek "chela" or claw, for the shape of the molecules. In laymanís terms, the molecules, which have sulfur atoms in them, attach to the mercury with a stronger bond than the surrounding atoms. The resulting molecule is then evacuated.

The principal agents used for chelation are:

∑ DMSA

∑ DMPS

∑ EDTA

∑ Alpha Lipoic Acid

Chelation with these agents is safe and should be done under the supervision of a qualified health care provider. Beginning in the 1940ís, DMSA was used on thousands of inner city American children for chelation of lead. The kids are now in their fifties and sixties, and have shown no apparent long-term effects of using DMSA. Consequently, DMSA has been approved for childhood use for decades for lead.

DMSA is also an effective, if somewhat slower chelator of mercury. The controversy arises from treating a supposedly lifelong disabling mental disease with a chelating agent. The fact of the matter is that with removal of mercury, the children show improvement, sometimes dramatic improvement. It has also been shown that autistic children do not excrete mercury during the fist 18 months of life. Consequently, they are carrying the entire load of the mercury injected into them as a result of the vaccine schedule

It is essential, in our view to get the heavy metals out of the children to begin the process of accomplishing homeostasis and immune function. However there are several issues that are inherent in the use of chelators, especially DMSA and Lipoic Acid (ALA). Chelation, is the proverbial "Faustian bargain." You have to make a deal with the devil to get progress. DMSA and lipoic acid are yeast foods. The more you chelate, the heavier the yeast is going to be. It is essential you get the gut issues resolved before beginning the chelation. An unhealthy gut will not rid itself of toxins effectively. However, the gut will not be completely healed until the mercury is removed. You see the problem.

Second, there is the issue of the blood brain barrier. It appears as though neither DMSA nor DMPS will cross the blood brain barrier (BBB). This barrier , which protects the brain, is semi permeable, and will not allow molecular structures of a certain size, or larger, through. Consequently, it appears that DMSA cannot remove mercury from the brain. Alpha lipoic acid can and will cross the BBB. Mercury will also attach to ALA. ALA does not appear to be strong enough to remove mercury entirely. The theory is that by using ALA and DMSA together you will be able to pull mercury out of the brain and the DMSA will take it out of the body.

In the end, we have been pulling large quantities of mercury out of William. In one year William dropped from 22 to 12 on the scale. We continue to periodically chelate him, although yeast continues to be a problem when we do.

The lab tests will frequently show other dangerous heavy metals such as antimony, arsenic, nickel and lead. Chelation works for all of theses metals as well.

Enzymes and Healing

About 20 years ago, Norwegian physician Kalle Reichelt, M.D. began studies of the digestion of autistic, schizophrenic and bi-polar children. At the same time, at the Sunderland University in England, Paul Shattock began work on the blood of autistic children. They found, almost without exception, abnormal digestive processes, and especially of casein and gluten. In particular they found abnormal by-products called peptides in the urine of affected children. These peptides were almost identical in molecular form to opiates like morphine. It was determined these substances could cross the blood brain barrier and trigger the "opiate receptors." i.e. receptors in the brain. If an autistic child appears stoned or far away, it is because they are being bombarded by peptides (gliadin and casomorphins). Where do these peptides come from?

Normal digestion of casein and gluten requires an enzyme called Di Peptyl Peptidase IV (DPPIV). Heavy metals, as well as yeast interfere with the production of DPPIV. Incompletely digested gluten and casein do not break down into the fundamental amino acids available to the body. Instead they become toxic peptides. Because of the leaky gut, the peptides go straight to the brain and interact with the opiate receptors there.

There are enzyme supplements, which are available to assist in digestion. These should not only include DPPIV, but also Lipase, Sacchrydase, and a host of other enzymes. Of course, this area is very new, and there are new discoveries being made about enzymes every day. William showed dramatic improvement after we placed him on something called the the Enzyme Complete with DPPIV products.

Immune Treatments

Few of the issues confronting these children are scarier, and fewer still are more daunting that the immune system breakdown. By this, we mean the myelin basic protein antibodies , and the complete breakdown of the gamma globulin system. In effect, the children have the same immune system profiles as AIDS patients. Indeed, children with autism are using many of the treatment protocols available and used by AIDS patients, such as N-Acetyl cysteine, transfer factors etc.

The presence of autoimmune antibodies means the childrenís immune system has gone haywire. Their own antibodies believe the cells of the nervous system, in particular the myelin sheath, are external invaders. The body then sets about attacking its own cells. Another well know form of this process is rheumatoid arthritis. Certain forms of asthma are part of this process.

The essence of recovering the immune system is to re-educate the body, and re-introduce immune factors into the system, that appropriately identify invaders and stop the inappropriate responses. The challenge with these treatments is they frequently involve blood products, or transfer factors from other species. The treatments are both expensive and controversial

Because of the fact William had almost no IGg or immunoglobulin factor g, we decided to have intravenous gamma globulin via transfusion. Aside from the trauma of getting an IV into an autistic child, the inherent threat of blood borne pathogens in any blood product is scary. We also used a pathogen specific transfer factor directed at measles. William responded dramatically. He threw up a gelatinous mess and his health seemed to improve overall. He no longer had coughs and recurrent asthma or bronchylitis. Most dramatically, the next time we checked his blood for myelin basic protein antibodies, he was clean. Williamís measles titer also dropped. We managed to rebuild a portion of his immune system, which has proven very difficult to fix. William managed to beat one of the toughest issues facing the children!


Part 4

Because of recurrent diarrhea and gut inflammation, many kids have demonstrated classic malnutrition symptoms. The essence of good health is good nutrition. The essence of good nutrition is providing the body with the elements ( Zinc, Magnesium, Selenium, Molybdenum, and others) fatty acids ( omega 3 fatty acids and others) and Vitamins ( A, B6, B12, C, E, and others) that it needs to maintain optimum function. A deficiency in any one of these substances has a chain reaction effect on the entire system. For instance, the absence of zinc, affects the uptake of vitamin A as well as the functioning of the immune system. The absence of Vitamin A has an entirely different set of symptoms associated with zinc deficiency. Without the presence of zinc in the liver, retinol is not produced and vitamin A is not metabolized.

Affected children do not have good intestinal absorption function. Therefore, a substantial number of the nutrients "normal" people take for granted are not absorbed. Laboratory tests for children with autism, ADHD / ADD and other spectrum disorders almost invariably show extremely low zinc, extremely high copper, and very low magnesium, and other trace elements needed for metabolism. On top of this, the children are on an extremely restricted diet, at least to begin with. It is therefore essential to rigorously address the deficiencies with supplements. It is also essential the supplements be casein and gluten free.

There are numerous studies, which show that supplementation with B2, B6 and B12 as well as trace elements will have significant benefits for the child with autism and ADD/ADHD. Some of the supplements are packaged specially for the autistic child. Typically children will have a supplement list which will include:

Vitamins B2, B6 and B12
Vitamin C
Zinc
Magnesium
Omega 3 fatty acids
Molybdenum
Selenium


We supplement William with all the minerals, especially zinc and magnesium. Transdermal supplements also appear to get minerals in the kids.

Finally, Dr, Rosemary Waring, a research scientist and physician in Great Britain has found that the children suffer from problems of sulfation. In other words, the bodyís natural detoxification pathways, heavily moderated by sulfur are deficient. Studies have shown that supplementation of sulfate minerals can have a dramatic effect. For instance, bathing with magnesium sulfate (Epsom Salts) can have an extremely beneficial effect. Similarly, children who get transdermal zinc sulfate also seem to do better. Sulfation is also greatly aided by molybdenum and selenium. Lastly, transdermal glutathione is an essential part of the sulfation chain.

Glycoproteins

We were well into our recovery program with William, who had been making steady, but sometimes, slow progress. The idea of "progress" with a supposedly lifelong, incurable disease is certainly an interesting one. William began seeing a naturopath who had quietly been treating children for several years with glycoproteins. Without getting into complex biochemistry, glycoproteins are molecules on the outside of the cell wall. They were discovered in the 1950ís, and for many years were called "ornamentals" because the scientific community did not understand what they did. They must therefore have simply been "ornamental,"or useless. Several decades later, it was discovered these molecules, of which there are eight essential types, combine in 1.2 million different combinations, and are the principal way cells tell each other what to do. Subsequently, scientists learned how to "synthesize" glycolproteins, which occur naturally only in vine-ripened fruits and vegetables.

Without an adequately functioning glycoprotein system, you can pour supplements down your child. If the cell doesnít know it needs zinc for instance, it will not take it up to manufacture glutathione. Glycoproteins help this function. Glycoproteins are safe, because they are what the body uses to metabolize. They are also essential to maximize metabolism.

We placed William on glycoproteins and within two weeks he was putting on weight ( he is now squarely in the middle of his height and weight percentiles). He lost the pallor and chalkiness and his expressive speech and generative behavior increased dramatically. William has now started imaginative play and actively interacts with his sister. He appears, for all purposes, to be doing a lot of the "chelation and sulfation" work himself.

In short, we believe the use of glycoproteins has been an integral part of Williamís progress. Those children we know who have started them have also shown dramatic progress.

THE ROAD AHEAD

We plan to continue giving William the best chance at a full recovery. The road has been filled with people telling us why what we are doing will not work. To them we say that we would rather have done something and found that it was not helpful, than not to have done anything. Everything we have done seems to have helped William. Because most of the therapies are nutritionally-based, there is very little you can do which can be harmful.

In the immortal words of the American poet, John Greenleaf Whittier: "Of all sad words of mouth or pen, the saddest are these: it might have been."

 

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