252Chapter 9DMGDMG, or dimethylglycine, is an amino acid that can be found in many common food items like meats (especially liver), various grains, and beans. It has been classied as a type of amino acid that is closely linked to vitamin B.There have also been interesting developments in the use of a DMG supplement for children with autism. Because many children who have autism are unable to tolerate eye contact, and some have problems forming complete sentences and thoughts studies investigated whether an increase in DMG consumption could help to alleviate many of these problems. In fact, the study found that when children with autism were given supplemental DMG they appeared less frustrated and showed a marked increase in their speaking and cognitive abilities.17 At present, this research remains novel and therefore further investigation is necessary to determine what the long-term effects of DMG supplementation might have on children on the spectrum.The following paragraphs were excerpted from Defeat Autism Now!18 Dimethylglycine (DMG) for AutismFor over 20 years ARI has been hearing from parents who have tried DMG on their autistic children. In many cases remarkably good results have been seen, especially in enhancing speech. In some cases, drug-resistant seizures have been stopped by DMG. (See New England Journal of Medicine, 10-21-82, pgs 1081-82).There is an extensive research literature on the safety and health benets of DMG. Many studies have shown that DMG enhances the effectiveness of the immune system, improves the physical and athletic performance of humans and other animals (e.g. race horses) and has, all in all, a very wide range of benecial effects. It is very safe. I have seen no evidence of any toxic or signicant adverse effects. Many parents have reported that, within a few days of starting DMG, the child’s behavior improved noticeably, better eye contact was seen, frustration tolerance increased, the child’s speech improved, or more interest and ability in speaking was observed.A full dose of DMG is 900 mg per day, taken without food upon waking. However, it is best to start at a lower dose and slowly work up to 900 mg over a week or so. If you see an increase of hyperactivity (which is rare), reduce the dose. If no improvement is seen within a month I would switch to TMG.
253Step 4 - Other SupplementsTMG - Trimethylglycine (Betaine Anhydrous)TMG (Betaine anhydrous} is a chemical that occurs naturally in the body, and can also be found in foods such as beets, spinach, cereals, seafood, and wine.How does it work? A form of betaine called betaine anhydrous helps in the metabolism of homocysteine, a chemical involved in the normal function of many different parts of the body, including blood, bones, eyes, heart, nerves, and the brain. Betaine anhydrous prevents the buildup of homocysteine seen in people who have problems with its metabolism from birth.19The following is excerpted from the Autism Canada Foundation.20 Please visit their site .www.autism.org .for full references contained within the text.The benets of taking DMG or TMG range from behavioral changes, reduction of seizures, and decreased obsessive-compulsive behaviours to improved language. DMG and TMG have been reported from thousands of families to be quite benecial to many individuals with autism.Research on humans and laboratory animals has shown that DMG and TMG enhance the effectiveness of the immune system. Some children and adults with autism have seizures, and there are published reports of decreases in seizure activity as a result of DMG. A double-blind placebo-controlled study by Drs. Shin-siung Jung, Bernard Rimland, and Stephen M. Edelson involving 84 participants documented a signicant decrease in behavioral problems.It should be noted that some kids tolerate DMG but not TMG. TMG is given upon waking without food, in a dose of 500mg. If DMG didn’t yield improvements in language, then we switch to TMG.FAQ’sThere are times when I do see undigested food in my son’s stools. I am particularly concerned. He never complains of stomach pains. But I do see some at times, especially cashews. Should I bother with an enzyme? Or is it better without one. If so, which brand?I love enzymes. Kirkman has one with Isogest®, 851/180 is the number, and it’s broad spectrum. Also, Biolm Defense® is great for dissolving the biolm. A number of the parents online have used Ness® enzymes Gastric comfort formula #601 very successfully.
254Chapter 9How should I administer THERALAC®?The best time to administer probiotics is at bedtime. Children’s THERALAC® is a granular formula so you can sprinkle it on yogurt or mix it into a smoothie and still obtain the same benets! So how do you take it? We recommend that you take a level ¼ teaspoon and fold it into yogurt, applesauce, or food of a similar consistency and let it sit for a minute. This is to keep the granules as close together as possible, thus allowing our acid proof gel matrix to form around the product. Visit the THERALAC® website for more info:www.theralac.com/childrens-theralac.aspxSupplement Dosing OverviewSupplement Dose Time of DayEmpty Stomach (ES) or With Food (WF)Probiotics 1 cap Before Bed ESOmega-3/ Omega-61 TbspWith any meal 1-3x / dayWFL-Carnitine 250-1000mg/dayWith any meal 1-3x / dayWFGABAUp to 2,500mg 2x/dayUpon waking & at bedtimeES5-HTP 50-200mg Morning & Evening WFL-TheanineWork up to 200-250mg/dayMornings or Mornings & NightsESPycnogenol25-40mg a day/as neededMorning WFL-Carnosine200-400mg 2x / dayMorning & Evening WFTaurine 500-1500mg/dayMorning, Noon & NightESDMG 900mg/day Morning ESTMG 500mg/day Morning ESEnzymes 1 cap w/mealsMorning, Noon & NightWF
Chapter 10Step 5 - ChelationSo, let’s say we’re clipping along; full Diet, CD, Kalcker Parasite Protocol, and we’ve added in whatever supplements the child specically needs and the child still has autism. Recovery is still not a reality . yet! At this point, it’s time to look at chelation.Why use Chelation for Autism?Chelation became very popular in the world of autism about a decade ago, when things were heating up around the Thimerosal/Autism connection. Today, many of our children are still metal toxic. Metal challenges (testing that shows metals in urine) from any of the thousands of children whose families I have helped show the same thing—extremely high levels of mercury, lead, aluminum, as well as sometimes tin, cadmium, and other metals.These heavy metals can come from various sources such as:• Coal burning power plants. According to the EPA, coal-red power plants in the United States emit about 48 tons of mercury into the air every year, where more than half of this mercury falls within ve miles of the plant itself. When it reaches the water, microorganisms consume it and convert it into a substance called methyl mercury.• Drinking water• Our food supply• Cookware• Deodorant• Beauty products• Dental amalgams• Vaccines, etc.Heavy metals are known to accumulate in different parts of the body including organs, bones, joints, and the brain, etc. Metal toxicity can provoke
256Chapter 10inammation, kill neurons, cause behavioral changes, affect the thyroid and other master glands, lower T-cell counts, and cause a myriad of other symptoms. Furthermore, new research shows that uoride in drinking water makes the aluminum that we ingest more bio-available. As was reported in the journal Brain Research, the combination of aluminum and uoride causes the same pathological changes in brain tissue found in Alzheimer’s patients.1Many children with autism also have impaired methylation cycles. The result of this impairment is an inability of the body to rid itself of excess metals, thereby prolonging chronic illness.What exactly is methylation?Methylation reactions are those that involve the transfer of a methyl group from one compound to another. The methylation cycle is the name given to a biochemical pathway that contributes to a range of crucial bodily functions, including:• Detoxication• Immune function• Maintaining DNA• Energy production• Mood balancing• Controlling inammationImpairments or mutations on the methylation cycle can lead to problems with:• ASD’s• Alzheimer’s• Diabetes• Allergies and AsthmaAn overload of toxins (including heavy metals), can contribute to the impairment of the methylation cycle, and if the methylation cycle is impaired the body is unable to detoxify as needed, therefore creating a vicious catch 22. We need to help our children’s bodies rid themselves of their excess metals as part of the healing process. Dr. Usman has shown us that heavy metals are present in the biolm, and Dr. Klinghardt has shown that removing mercury can be directly related to a reduction in chronic infections.2Let’s get those metals out!
257Step 5 - ChelationWhat exactly is Chelation?Chelation is a process used to rid the body of heavy metals. It is described as a chemical process in which a substance (chelator) is used to bind molecules, such as metals or minerals, and hold them so that they can be removed from the body. Some of the most common chelators used in the world of autism are:EDTAThis is an amino acid that attracts lead, other heavy metals, and some minerals from the bloodstream and expels these toxic elements in the urine. EDTA works to remove excess lead from the body, but it is not specic to mercury or methyl mercury as are DMSA or DMPS. It can be taken orally, by rectal suppository, or IV.DMSAThis is an FDA approved drug that can be used in children when lead toxicity is suspected, however it can also be effective at removing other heavy metals including mercury and arsenic. It can be taken orally, transdermally, or given as a suppository.DMPSDMPS is given to remove mercury from the body. It can be given IV, intramuscularly, subcutaneously, transdermally, or by suppository.Patrick has been prescribed all of these at different points of his life, and I can’t say that I saw miraculous results during the time that I used them. However, some families have seen results, and this is something you may want to discuss with your doctor. After years of using chelators, and seeing other families use chelators, I have opted for a gentle approach. I like to use two products: bentonite clay baths and Bio-ChelatTM. These products are strong enough to help the body rid itself of heavy metals, but have not been shown to stress the liver or provoke undesirable detox symptoms.Knowing now that metals are in the biolm, I feel it is short sighted to focus solely on metals or heavy metals rather than all the pathogens in the biolm.Bentonite Clay BathsBentonite clay is sedimentary clay composed of weathered and aged volcanic ash. Bentonites are more widely known as healing clays used for detoxing, cleansing, and drawing out impurities. They are used in many everyday products such as toothpaste, antacids, and cosmetics.
258Chapter 10Indigenous people have used bentonite clay for centuries; Dr. Weston A. Price in his book, “Nutrition and Physical Degeneration,”3 stated that when studying the diets of native tribes he examined their knapsacks. Among the tribes examined in the High Andes, in Central Africa and the Aborigines of Australia, Dr. Price reported that some knapsacks contained balls of volcanic ash clay, a little of which was dissolved in water.Bentonite is known as “swelling clay.” When bentonite clay absorbs water and swells up, it is stretched like a sponge. Toxins are drawn into these spaces through electrical attraction and bound. In fact, according to the Canadian Journal of Microbiology, bentonite clay can reportedly absorb pathogenic viruses, as well as herbicides and pesticides.5One of my personal favorites has been Even Better Now®’s product available at:www.evenbetternow.com“EBN® Cleansing Clay is 100% pure sodium bentonite clay which has the highest cation exchange capacity (CEC of 98-107 meq/100g) of any bathing clay that we tested on the market. This clay is high purity air-classied sodium bentonite, selectively mined, consisting of micronized particles, which is a free-owing powder. EBN® Cleansing Clay is 100% pure, hypoallergenic, and free of viruses, bacteria, yeast, and mold, as well as having a high cation exchange capacity.”There are other quality clays on the market, but EBN® tests every batch for heavy metals when it comes in. No, I do not receive nancial gain from the company.Bio-Chelat™Another product I really like for gentle (low and slow) chelation is Bio-Chelat™. This is a German product containing a minimal amount of EDTA, which is FDA approved as a food substance. According to a clinical trial carried out in Germany:The therapeutic value of the Bio-Chelat™ in the context of other chelators that are currently on the market is seen as follows: Chelators work relatively fast, but they are also very strong with a relative high washout of important trace elements and a high degree of specic side effects. Bio-Chelat™ works much gentler than most common chelators.
259Step 5 - ChelationAlthough during the treatment a signicant decrease of the body’s heavy metal ion load was seen, this is accomplished without greatly disturbing the mineral and trace element relationships. The reduction of zinc should be looked at with caution and may easily be corrected throughout the treatment.5I have seen very positive changes in many of the children who added in either bentonite clay baths, Bio-Chelate™, or both. As with any other intervention, add them separately while closely observing your child. Keep a log to record any changes, progress, or reactions you observe. Even if you don’t see anything right away, I would keep using the products for a minimum of three months. Again, since they work LOW and SLOW changes may not be apparent at the outset, but that doesn’t mean they are not helping to heal your child’s body.I use the CD baths every other day and then two times a week I do bentonite clay baths. I don’t do the CD bath and the bentonite clay bath on the same day. I do them at opposite ends of the week.Three days or so later, we’ll add in the Bio-Chelat™. Again, follow the instructions on the package, and you can always start low and work your way up. Since Bio-Chelat™ doesn’t alter the CD, the drops can be added to a single dose of CD. In addition, since the drops have no avor, it is suitable to add them to water or any other drink your child might consume throughout the day. Common Errors in Chelation:Urine analysis without provocation: Many families will do urine analysis to see if there are heavy metals present. If you have not done any chelation (oral or intravenous) you really don’t get a good picture of what kinds of metals are actually in the body. Simply because the metals don’t show up in urine, doesn’t mean they are not present in the bones, the intestinal tract, the brain, and organs, etc. If we don’t do any sort of provocation, we may end up with a false negative, leading a family to believe that their child is not metal toxic, when in fact they are. Bentonite clay baths and Bio-Chelat™ are gentle enough that they will not cause any harm to a child (metal toxic or no) but can greatly help reduce the heavy metal load, as well as other toxins in the body.
260Chapter 10Healing the gut before starting chelation:A doctor once told me that we had to heal the gut before we could start the chelation process. However, in the children that I have seen recover, probably up to the last month before they recover, their gut might still not yet be perfect. For example, one of the little girls that recovered continued to suffer from constipation at 30 days before she lost her autism diagnosis. However, at this stage something seemed to switch, she started having regular bowel movements and within 30 days she lost her diagnosis.Basically we’re healing the intestines as we’re chelating, as we’re healing everything else. They are all parts of the puzzle. I would never put chelation before the CD or parasite protocols. However, it’s denitely something that’s part of our road when, after these other approaches, children have not yet recovered. At some point after we have the CD, ocean water, parasite protocol and some supplements is when we can add in chelators. It’s not like I’m saying, “Oh we’ll talk about that in a couple of years.” We want our children recovered in less time. It’s like a marathon, we keep the pace, never lose our heads, or break into a sprint.Do not chelate with constipation:If the child suffers from constipation, it’s really important that we start moving the intestines when we’re using chelators. There are a few options open to us for moving the intestines. I have found that the most effective is through the use of CD enemas. If your child isn’t having a daily bowel movement, I would do an enema once a day. If you absolutely can’t do enemas, get that child in a CD bath. We’re nding that 50 to 100 drops in a bathtub is allowing children who previously had constipation to have bowel movements.There are a few children/adults on the protocol that will not do enemas, or the parent will not. Whatever their situation may be, we have to get the bowels moving again. In this case, we do 50 to 100 drops in their bath water along with their max oral dose every day. The result has been that they’re having regular bowel movements. That’s one way we can move it along and then you can keep chelating. It’s really important to have a daily bowel movement with any kind of chelation because otherwise the toxins are simply reabsorbed through the intestinal wall, whether they’re heavy metals or other pathogens.
261Step 5 - ChelationIV chelation is not the only means by which to cure autism:I think at one point between 2006-2008, we were all focused on the problem in the world of autism being the heavy metals, because there was mercury/Thimerosal in the vaccines. We had to get the mercury out of our children. Well, part of the problem is they’re not detoxing. As mentioned before, methylation cycles are impaired in children on the spectrum. I met a young girl whose parents were both allopathic doctors and they really believed at that point, as most of us did, that heavy metals were the problem with autism. If we could get the heavy metals out then they would recover. The parents did 122 IV chelations and their child never improved. At this point I have lost touch with them, but these are things that we have to learn along the way. I know now that it is NOT just about chelation, and why metals are NOT the only important piece. All of the pieces play a role and likely interact to cause autism in our children. There is a symbiotic relationship between the viruses, bacteria, candida, and parasites that exist in the biolm. Since CD can break down biolm and kill the pathogens living in it, as well as neutralize heavy metals, it has been a very powerful tool for us.Doing a blood test to look for heavy metals:Generally speaking, within three days of heavy metals entering the bloodstream, the body will deposit the heavy metals into tissues, organs, and eventually bones. For this reason, a blood test is not the best place to look for heavy metals in children with autism. Unless the child has very recently been exposed to heavy metals, we are unlikely to see elevated levels of heavy metals through a blood analysis. The articles at the end of this book (Appendices 13 & 14) will provide further insight as to why chelation can be so important for our children on the spectrum.
Chapter 11Step 6 - Hyperbaricsby Bob Sands (Introduction by Dr. Beatrice Golomb)“What Oxygen is to the lungs, such is hope to the meaning of life.” ~ Emil BrunnerWe were fortunate enough to have the amazing Bob Sands write this chapter on hyperbarics explaining its importance in healing ASD’s.Note: Throughout this section of the book, the author, Robert Lyne-Sands uses the actual names of the people with whom he came in contact with. In some instances it is with their permission, in others it is not. The accuracy of quotations, opinions expressed within this chapter, and the names used are solely the responsibility of Robert Lyne-Sands. Great care has been taken to remain within the bounds of current journalistic integrity and practice.Robert Lyne-Sands new book, OXYGEN: The First Medicine, Volume 1 CANCER, is expected to be released January 2014.Robert Lyne-Sands author of the Hyperbaric section of the book, with one of his young patients, getting ready for a session.
264Chapter 11Recently, I sought the answer to something that was puzzling me. My friend, Dr. Bernard Gunter, is a revered and renowned psychologist in his eighties and, if anyone would know the answer, Bernard would.“Does God, Great Spirit in the Sky, The Universe or whatever unseen deity you worship give you freedom for personal choices or is everything predestined?”Bernard’s eyes twinkled. He was never in a hurry to answer a question. In my mind, Dr. Bernard Gunter is sort of the American version of the Dali Lama. He thought for a moment, selecting his words carefully, and then replied, “Funny you should ask that—just the other day I was talking with Eckhart Tolle and asked him that very same question. Tolle replied, ‘God allows you to think that you have free will and free choice—and you do, by and large. However the roadmap is laid out for you beforehand.’”Just as I suspected.Dr. Bernard Rimland, Kerri Rivera, and the Hand of God.On January 20th, 2006, a tall, glamorous woman walked into my San Diego clinic; her name was Kerri Rivera. She had brought her small ve-and-a-half-year-old son, Patrick all the way from Mexico for hyperbaric oxygen therapy. The little fellow was absolutely gorgeous, but had a vacant stare and made no eye contact with any adult, rarely even with his mother. Day after day Patrick spent time in the chamber.Robert Sands is one of only about ve licensed manufacturers of hyperbaric oxygen therapy (HBOT) machines in the US, with extensive experience in clinical hyperbaric treatment, whose expertise will be an exceptional asset to this project. He has designed and manufactured HBOT machines for the US, Australia, Britain, Thailand, and many other nations, for naval/military use, civilian diving use, and medical use. He has the theoretical understanding of HBOT therapy that derives from intimate involvement in the process of designing and manufacturing these machines. He has the practical experience that derives from running a set of HBOT centers, and personally overseeing greater than 20,000 hours of HBOT sessions over 35 years.~ Dr. Beatrice Golomb, MD, PhD. Professor of Medicine. UCSD 2011.Beatrice Alexandra Golomb, MD, PhD (PI) is singularly qualied to lead this study. She has expertise in GWI including authorship of four RAND reports related to GWI29-31, and work in the scientic literature. She has been a member, since its inception, of the Department of Veterans Affairs Research Advisory Committee on Gulf War Veterans’ Illnesses, and served as Scientic Director of this Committee. As a licensed internist, she is a primary care physician for a panel of 280 veterans, including GWV, at the VA San Diego Healthcare Center.
265Step 6 - HyperbaricsKerri explained to me that Patrick developed normally for almost the rst two years of his life. Then, to comply with vaccine regulations, Patrick received the DPT, HepB, and Inuenza B (Pentavalente) vaccines in one day. Patrick fell into a complete zombie-like state after the injections. By the time Kerri arrived in San Diego, she had already done her homework. She blamed the vaccinations and had already undertaken the task of healing her son.After her own experience with autism, Kerri wanted to help people and she was already doing the DAN! Protocol, etc., as Dr. Rimland has done so much for the children and she had a lot of respect and admiration for him and his work.One day, I walked into the clinic and told her, “We’re having lunch with Bernie tomorrow. Get a babysitter.” At that point, totally shocked, she said, “Oh my God, yes, but I don’t have anything to wear!”“Trust me, what you have on would be just ne.” A ustered Kerri rushed off to purchase some dressy clothes—she was, after all, a woman originally from Chicago. The very next day, we were sitting with Bernie and his wife Gloria in a quaint little restaurant, The Green Tomato. If the reader wishes to see that day, just go to your computer and look up Bernie on Wikipedia and there you will see Kerri in her black business suit (http://en.wikipedia.org/wiki/Bernard_Rimland).Over lunch, Bernie and Kerri bonded immediately. None of us at the table realized that Bernie was suffering from cancer and had less than a year to live. Driving the short distance back to my clinic I made the observation to Kerri that I suspected she was about to become a scientist, and no longer just a trophy wife. “Be careful,” I warned her, “Bernie Rimland’s mantle will be heavy on your shoulders.”Kerri turned her face toward me and said, “I will carry that mantle willingly and with honor.”After a few days, Bernie told me that he thought Kerri had what it takes to carry the torch and help families heal their children with autism. I saw a lot of Bernie in the next nine months. He would come down to the clinic for regular hyperbaric treatments because it eased the pain of his cancer. Just before his death, he told me, “I will not die before I have found the reason for and defeated autism.” But die he did on November 21, 2006, at the age of 78.
266Chapter 11As I drove to Bernie’s grave, I anticipated many, many people lining the way with some hundreds even thousands thronging the memorial park, similar to Giuseppe Verdi’s funeral, in 1901, where 200,000 people gathered. At his graveside, the thousands of mourners spontaneously burst into the “Slaves Chorus” from his Opera, Nabucco.I was stunned upon arriving. Probably less than thirty or so weeping caregivers of children with autism were present at the burial, along with Gloria and Bernie’s three children. WHERE WERE ALL THE PEOPLE, THE MOTHERS AND FATHERS, THE RESEARCHERS AND SCIENTISTS? I asked myself. It was my rst Jewish funeral and I think that the booming sound of the shovel full of earth that I threw down onto his plain casket made me look heavenward and ask, “God, where are you now?”I drove home, eyes unfocused with tears, and stone eggs of the birds of unhappiness in my heart, stopping only to purchase two ne bottles of wine to toast Bernie. I knew one would not be enough. Arriving at my house, I found the ne crystal goblet my Mom had left me, lled it, and played Neil Diamond’s, Morningside over and over, with each playing, another glass, held high to Bernie .MorningsideThe old man diedAnd no one criedThey simply turned awayAnd when he diedHe left a table made of nails and prideAnd with his hands,He carved these words inside‘For my children’Morning lightMorning brightI spent the nightWith dreams that make you weepMorning timeWash away the sadnessFrom these eyes of mineFor I recall the words an old man signed‘For my children’And the legs were shaped with his handsAnd the top made of oaken woodAnd the childrenThat sat around this great tableTouched it with their laughterAh, and that was good
267Step 6 - HyperbaricsMorningsideAn old man diedAnd no one criedHe surely died aloneAnd truth is sadFor not a child would claim the gift he hadThe words he carved became his epitaph‘For my children’In fact, as I sit here writing this, I play Diamond’s melody and listening to the words makes my heart swell and my eyes become damp.The morning after Bernie’s funeral, hung-over and miserable, I pondered: Did my beloved friend Bernie die feeling that he failed? I now doubt it for he had passed his mantle to carry on his search for the cure without fear, without the need for accolades and rewards and to do so with integrity. I did not know it, but before his passing, Bernie and Kerri had been in communication. Bernie had given her permission to translate his Defeat Autism Now! Protocol into Spanish, Kerri’s other language, as well as other tasks.In review, I now see God’s Hand at work—and it started one afternoon at the Green Tomato. Thus, my question to my friend on free will versus predestination right at the start of my notes on this section.Brain overload and frozen ngers.At the time, when Kerri asked me to write this section of her book about hyperbaric oxygen therapy and the treatment of challenged children, my mind went into overload. Why? Kerri was (in my view and that of others) the most efcient and effective health scientist with a high normalization rate of challenged children (autism, etc.). With her own hospital-quality hyperbaric oxygen center, Kerri had rst-hand knowledge that to normalize such an aficted person required a lot more than some trips in a oxygen chamber or some Silver Bullet response from a pharmaceutical company.My brain whistled like an express train rushing through a tunnel. I thought of the dozens of children that hyperbaric oxygen therapy has helped at my different centers. Some of the little guys were so badly damaged they would repeatedly punch at their own head, or chewed on their own wrists. I’m thinking of Marco as I write this. Ten years later, he still punches. A clearly dened casualty of a hotshot thimerosal vaccination, normal until three, his parents won a multimillion-dollar lawsuit against Big PHARMA. There has
268Chapter 11been some progress over the years; but it will be a matter of unrelenting attention to Marco.I remember another little guy; a handsome, articulate smiling boy of about 12 years of age named Chase. Meeting him and his parents, you would never know he had autism or ADHD. Chase was a “runner.” When his treatment in the chamber was over, he would promptly disappear out of the clinic doors. Eventually, Chase would be carted back down by one of the upstairs nurses. “Chase” by name and chased by nature.After one such session in the chamber, he rocketed out and into the restroom of the clinic. I was sitting at the controls when he came back. Chase climbed up onto my knee and said, “I love you Bob,” and he rubbed his hands across my face. From the terrible odor I knew in an instant what was all over my face and my lips. Chase had used his hands instead of toilet paper and bypassed the washbasin on the way out.“Oh goodness,” came from his horried mother. “He got you. I am so sorry. It is one of his favorite jokes.”“Not to worry,” I said, “I have eaten and tasted this in a variety of forms most my life.” So, whenever I hear somebody say, “Sands is not a Doctor so he doesn’t know s—t from Shinola,” I think of Chase. Normalizing kids is so rewarding, but you have to take a chance on s**t.My ngers were not ready for the keyboard as I tried to wade through dozens of experiences with these children, my own personal experiences, and nally adding input from experts in the eld of pediatric abnormalities. (Many of these experts became my close, personal friends as the years went by.)For any parent or caregiver to delve into all of the opinions and conclusions of the so-called experts, it is a bewildering journey through a lot of contradictory and self-serving educated guesses and erroneous assumptions. To arrive at something that the reader will identify with, and believe in, I have to go way back. After 70 years on the face of this planet, I have reached certain conclusions about the treatment of children that enables me to write this section. Mind you, I’m not stuck in my ways and I am open to change my thoughts and conclusions as the science improves on treating children with autism.
269Step 6 - HyperbaricsLittle Patrick Rivera, Little Bobby SandsSomething in Common?Here is something that I doubt my adult children even know about. In 1947, polio was raging throughout Australia. I was seven years of age and had developed a sore throat and fever. My father, a wealthy man, called the very best doctor to my bedside—yes physicians did make house calls in those days. I can even remember the doctor’s name, Dr. Bradeld. His father had been the engineer that designed the Sydney Harbor Bridge. My dad, with all of his money drew a lot of water in those days and could get almost anything he wanted. Bradeld came in and examined me briey; after all he had other house calls that night.Bradeld told my Mom and Dad that he did not think I had polio, but perhaps diphtheria and that I should spend time in isolation in the infectious disease hospital overlooking Botany Bay, “just in case.” The next morning an ambulance came and, in spite of my fear, pleading, misery, and tears they carted me away. The three-hour journey became a six-hour journey. The ambulance broke down outside the Sydney airport. I remember looking out of the rain spattered window and seeing the aircraft clearly visible over the fence. We sat on the side of the road for almost two hours before the replacement ambulance came to transport me, and my journey continued to a huge colonial building complex, built by convicts and perched on rolling, green lawns that looked down onto the Pacic. The complex was known as, The Coast Infectious Disease Hospital, which later became Prince Henry Hospital. I was terried and clutched my teddy bear, Threadbare, under the blankets. Threadbare became my only friend for the next four months, and a glimpse of airplanes over the fence became an enduring memory of the trip.My parents were already there and had obviously lled out all of paperwork. I never got to say goodbye to them since it was an infectious disease hospital. As they walked past a big hopper window, they paused momentarily and Mum waved through the window. I saw them maybe three times in the next four months when the nurses wheeled my bed up against the window that looked out into the hall. They would tap on the glass and smile at me but because my father was quickly bored, after about ve minutes they would wave and be gone for another couple of weeks. It was a long way for them to travel.The night of my arrival, a team of doctors and nurses arrived and they rolled me onto my side. Full syringes lay on a tray; in those days they were glass with little thumb and nger holes on each side and each needle was reused and supposedly resharpened before their next use. This meant that the needles
270Chapter 11were thick and long. One-by-one these needles were inserted into my upper thigh on the left-hand side. The pain was agonizing and I’m sure I screamed and screamed. I remember at least three nurses holding me down. At seven, I was just a little fellow. There had to be at least 20 of these very large syringes. Checking the history books, I believe that they were mostly penicillin and sulfa drugs. I might add, it was already known to Doctor Bradeld that I was highly allergic to sulfa and remained so for my entire life.The next morning, when I awoke, I found that I was paralyzed from the feet up to just under my arms. Threadbare was my only friend for the next four months. The days all blurred together. One thing I do remember vividly is that I used to deliberately wet the bed. I did so only when a lovely red-haired nurse with a band of freckles across her nose was on duty. This nurse was kind and gentle, probably in her twenties. After she had changed the sheets, she would stroke my cheek and tell me that everything was going to be okay and not to worry about wetting the bed. The other older nurses scolded any of the other pediatric patients if they had an accident. At some point later, my gentle nurse told me that I really did not need to wet the bed to get her attention. I soon stopped and I still got a cuddle from her. Such a display of care and affection was unknown to me from my parents back at home.After that stay in the hospital, I was never the same. I know that there was constant discussion amongst my family members that I should be placed in some sort of an institution because my behavior was “contrary and stubborn.” I was either talking my head off, trying to make my family love me, or distant, and as such, I was said to be “uncooperative.” Soon after, I was placed in a Hogwarts-style boarding school. Could that childhood experience have made me what I am today, forever alone, but rarely lonely? As the years ticked by, to my surprise (and I think everybody else’s), the school counselors found that I had a genius IQ. Amongst the 1,200 boys, I was second from the top. After seventeen years of treating so-called challenged children, I have yet to nd one that was not as smart as a whip in something.I managed to burn every social bridge at the boarding school, thrown out of every special social club at Newington. On Saturday afternoon, after mandatory sports such as Cricket or Rugby, the other boarders would get to do things they wanted like billiards, photography, or gardening (these were clubs that you had to apply for and join). However, I had been expelled from
271Step 6 - Hyperbaricseach of them so I wandered alone each Saturday afternoon and nally picked the lock on a large room-sized cage full of Sulfur-Crested Cockatoos and other Australian parrots. I would sit alone with them and be jeered at by the boys in the garden club that were planting and weeding. Within weeks, these birds would happily climb all over me, enjoying my company. The birds loved me, but the boys and masters did not. To me, it was a two-way street. Animals made better friends than people. Eventually some of the other boys would come and beg to be allowed to accompany me into the cage so they too could have that same privilege.Do not get the wrong impression of my beloved Newington College in Sydney Australia; even today I dream of the sanctuary of that place. It was better than what I had with my family back home.The really curious thing is that my mind had blotted my hospital stay out, or had hidden it in some black cabinet in my brain where the really bad things are kept to allow me to get on with the reality of NOW. I remembered the illness and isolation only when Kerri asked me to write this. The details have returned with clarity: the old iron beds, the smiling face and freckles of my favorite nurse, being cold at night, the colors on the wall, the distant sight of the ocean through a window on the other side of the big ward, the frame of the window so far away that it looked like a painting hanging there. If I close my eyes as I write I can see it now. I now ask myself, “Is this the way children with autism feel?” I don’t know. What I do know is that my old friend and condant, teddy bear, is sitting on the desk as I write this. I reach out to rub Threadbare’s head and a great calmness washes over me. The little fellow is 64-years-old now and there is a great competition amongst my adult children to see who gets him after I die.Botched diagnosis The incorrect pharmaceutical response.With almost 40 years of working in medicine behind me, and now in my retirement, I do know that neither diphtheria nor polio were the problem. The suffocating “Bull Neck” or the “Strangling Angel of Children,” diphtheria, had not happened to me, nor did the withered limbs of poliomyelitis set in after paralysis.
272Chapter 11Simply put, Dr. Bradeld cocked it all up in a big way by guessing, not taking enough time and arriving at the wrong medical response on his visit. The relentless attack on me with sulfa drugs caused paralysis, which was probably what is commonly known today as Guillain–Barré Syndrome, a disorder affecting the peripheral nervous system. Ascending paralysis, weakness beginning in the feet and hands and migrating towards the trunk, is the most typical symptom; the disease is usually triggered by an infection.It sure sounds similar to what happened to little Patrick, and probably to the reader’s challenged child as well.Migrating to America in 1990 with my tribe of offspring.I arrived in the United States over twenty years ago. If the reader is interested enough, a quick look at a funny but classy “roast” presentation is on YouTube. You can nd it by searching “Robert Lyne-Sands” on YouTube.After completing the United States Navy transportable chamber development project, I arrived in swank, Pacic Palisades, on the outskirts of Los Angeles; living amongst all of the Hollywood greats. I was going nuts with boredom and became the “Bob Clampett” of the area; jogging down the leafy streets I always said Gudday to any celebrity. I rarely remembered their names but knew their faces. They never replied on the rst go past, but then I would jog backwards, keeping pace with them (big stars like Madonna always ran with a group of minders) and I would yell out “I said Gudday. My goodness, your manners are appalling.” I might add, it was not just me; they never ever nodded to each other when their paths crossed either. Around this time, I opened the very rst freestanding hyperbaric oxygen therapy center. It was more or less hidden away in Santa Monica on 6th Street. Tucked away in what used to be an old motel, you could almost refer to it as a “speakeasy” center, akin to something from the days of prohibition, where you had to knock on the door three times before being let in. I would only treat people who had been referred by another patient. Most of these people were from the entertainment industry in Hollywood, many with the HIV virus, and lots of folks with chronic fatigue syndrome.The kiss of death in Hollywood is to be known to be ill. Hyperbaric oxygen therapy works so well that the word soon got around, and I was inundated with patients, some famous and well-known, and others just hardworking folk in the movie industry. Thus, I ended up being known for some years as “Mr. Oxygen,” and because of the remarkable effects of HBOT, I befriended many of these celebrities, who subsequently invited me as their guest to many of
273Step 6 - Hyperbaricsthe big Hollywood functions (the only one that I missed was the Academy Awards).One of the rst of these talented people that became my close friend was Harold Michelson. Harold was an award-winning art director working out of DreamWorks. He was suffering the aftermath of a mild stroke. His wife Lillian had told me that her Harold loved crossword puzzles, but since his stroke he would put the across answer in the down column. This caused him immense frustration since his answer was usually correct, just in the wrong place. Five treatments in the little chamber were all it took for Harold to get his verticals and horizontals in the right place. The big thing that he noticed was that his blood pressure stabilized, his lung problems normalized, and he needed less medication for his diabetes.Harold still stood well over 6-feet–tall, though stooped with old age. We hit it off immediately because Harold had a quick wit and loved a good laugh. The stories and banter between us were constant. Harold was extremely talented yet self-effacing. He really was a hero in the truest sense of the word. As young man, he made over 40 ights across the English Channel to bomb Germany. As navigator, Harold sat in the nosecone of the B-17 and either froze with the cold on the trip or froze with fear when making the lower-level bombing run. “Bob, I was so frightened of the ak from the antiaircraft re from the Germans on the ground. As the puffs of smoke would erupt around the front of the aircraft, shrapnel would pierce plexi-glass windows in front of me. I would hold the navigational map in front of me and try to believe that the thin paper would stop the lethal fragments.”The rst challenged child to be treated in a hyperbaric chamber—Emily.I need to jump forward in time for a moment before getting back to Harold Michelson and his wife, Lillian. I went back into production of hyperbaric chambers after I realized the great need for hospital-grade dispensing of oxygen to the public. There were no rules preventing me from doing this even though I’m not a physician. All my patients needed was a prescription from a registered physician; that was the easy part. My rst center was in San Diego.In the rst few months of patient treatments we received a call from a father in Canada. His daughter, Emily, had cerebral palsy. The father had read that hyperbaric oxygen therapy would perhaps help his little girl normalize, and so when he asked me what I thought I gave him my usual answer, “I do not know, I am not a physician.” And then I added, “I would hate for you to waste your money on a trip from Canada to San Diego if it doesn’t work.”
274Chapter 11The father replied, “I have two choices. I can go to England where there is snow on the ground or I can come to San Diego. It is an easy choice to make.”So father and daughter duly arrived. Emily was the most delightful child. When she walked through the door she had a crash helmet on, knee guards, and wrist-guards to prevent serious injury when she would crash, face rst, into the oor. We learned a lot in the rst ten days of treating Emily. One of the rst things was the fact that fathers can never properly do a good job on their daughter’s hair. I felt for the father since Emily had lots and lots of hair and was never still for a moment (I have a few daughters myself). Emily would arrive looking like a rag doll; her little blonde head would have pins, bits of string and ribbon through it. So the very rst task of our nurses would be to grab Emily (usually tearing around the clinic), and comb her hair out to make her more presentable.Now, the really big thing that we noticed was that on day ten she arrived at the clinic without any of her body armor. Yes, she still “toe-walked” because her heels did not touch the oor. To compensate, she would park her little sts against her chest, push her elbows out to keep a center of gravity, and rush around the clinic. On day 11, father and daughter spent ve hours at the San Diego Zoo without the usual body protection. Emily never lost balance or tumbled even once. Follow-up visits over the last 17 years nd that Emily is living a normal life. Yes, she still has some walking problems, but never needed to undergo the mutilating surgery that was recommended to her by her Canadian doctors. During 20 days of hyperbaric oxygen treatments in San Diego, something had changed in Emily’s brain.Likely the most important introduction in my life . The Great-Spirit-in-the Sky’s (God’s) hand at work.Listening to the improvements that little Emily had made, Harold Michelson was both enchanted and excited.“Did you know that Lillian and I have an autistic son? We need to introduce you to a couple of people in San Diego. Dr. Eric Courchesne, who runs the autism research center for the University of San Diego, known as the Autism Center of Excellence or ACE.” Lillian chimed in and said, “I really must call them about you. Eric is a gem and his wife Rachel is also a research doctor. They work side-by-side and will be so helpful.”
275Step 6 - HyperbaricsWith Emily’s positive results, and more children making gains at the center, I called the Courchesne couple at the ACE and offered to provide them with the use of a $150,000 hospital-grade hyperbaric chamber for one full year. There was no response to my offer.While you may imagine that the UCSD-ACE Research Center is located in some lofty center of learning, it is in fact to be found in a delightful millionaire’s village known as La Jolla in Southern California, a block or so from the Pacic Ocean. On the top oor of a three-story building, an elegant balcony ran across the front of the building, while red and white umbrellas and tables make it look more like a posh restaurant than a research center. I waited about a month and called again and repeated my offer of a hyperbaric chamber, operated by trained technicians for a year, or whatever time it took to make a decision on efcacy, at zero cost to the ACE. About an hour after making the second call, my secretary told me that a Dr. Rachel Courchesne was on the line and needed to speak to me on an urgent matter. I picked up the telephone, anticipating a good conversation but this is the way that it went, all one-way at me. Dr. Rachel was in ne fury and, looking back, the only way I could have put a word into that conversation would have been to fold the word at and slip it into the tirade, sideways. She told me that it was amateurs such as myself that muddied the scientic waters of autism research and that, essentially, I should crawl back into whatever hole I came out of.She made it clear to me that the mission of the ACE was to perform research to nd a cure with pharmaceuticals. In fact, the ACE receives funding from drug companies, and that I should not bother them again. I was taken aback, to say the least. A decade later, Dr. Eric is apparently doing ne work. For example, in his recent research, quoted widely in the media, he has found that the frontal lobes of an autistic child’s brain is abnormally large. This is an observation, perhaps useful in the future, but only time will tell. But does it matter to you the reader whether this is so? Maybe yes, maybe no, so let’s hold off on that sort of thing until we get into the scientic part of the book.Let’s get back to Dr. Rachel’s harangue of me. In my mind, there is no doubt about the fact that for her, at least, it was all about the money and the potential for a patented silver bullet for Big PHARMA. If successful, a drug company could charge you a huge amount of money to heal your child with autism. At worst, there would be the ability to raise more money for research despite scant evidence of clinical results on children.
276Chapter 11An example of this ability to raise money on a potential medical marketplace is the fact that in the year 2012, the National Institute of Health (NIH) allocated $100 million over a ve-year period to a bunch of ACE research across the United States. So much for Lillian’s glowing endorsement of Dr. Rachel. However, the Michelson’s other introduction proved to be a link in the chain.Autism research with integrity—Dr. Bernie Rimland.“A dear friend of ours, Dr. Bernard Rimland, also has a research center in San Diego which he calls Defeat Autism Now!, or DAN! for short. Bernie’s son, Marc, is a true autistic savant. The movie with Dustin Hoffman and Tom Cruise, Rain Man, was modeled around Bernie and Gloria’s son. Bernie was the technical advisor for the lm. You must meet Bernie.”Lillian was especially grateful and fond of Bernie and his wife, Gloria. Back in the early 1950s, autistic children were attributed to cold, hard, heartless mothers. Many psychologists and psychiatrists agreed with the “Emotional frigidity” hypothesis, which suggested that the mothers were the cause of what we now know as autism. A lot of children in the United States were taken by force from their parents, and placed in isolated institutions to “protect” them from their parents. Bernie Rimland alone stood against this hypothesis; after all Bernie did have degrees in psychology, including a PhD. In fact, it was Bernie that took away the shame, the blame, and the guilt of many loving parents who were bullied into believing labels put upon them by the so-called “learned.”Driving forces behind autism research centers.Unlike the La Jolla location for the ACE, Bernie’s Autism Research Institute (ARI) was about ve minutes drive from my San Diego hyperbaric oxygen dispensary; two minutes of freeway, a quick turn into Adams Avenue, and I had arrived. Again with an erroneous assumption, I had thought that Bernie’s ARI would be similar to the ACE La Jolla location. In fact, I drove past Bernie’s place three times before I found it. An unassuming, clay-colored, converted storefront, with a little sign on the front door that said, “Autism Research Institute.” I knocked on the door and walked in. Instantly, the smell of antiquity and old books overwhelmed me and beguiled me, like something out of a Harry Potter movie. Stacks of papers were high on the oor almost in a willy-nilly fashion. A gentleman dressed in a checkered shirt came towards me. “Bob Sands? The Michelson’s said to expect you.” He peered over his glasses and gray whiskers at me. In that one glance, we created a bond of
277Step 6 - Hyperbaricsfriendship that lasted for more than a decade. At least once or twice a month we would lunch together along with his wife, Gloria; always two blocks from his Center, at the Bleu Boheme. Bernie and Gloria would carefully examine the menu and then they would both look out and recommend, “Let’s all order the fried green tomatoes.”Bernie was interested in clinical results. He would turn over any stone that would perhaps unlock the mystery of autism. When I rst met Bernie, 1 in 850 children born in the United States was aficted with this mysterious and terrifying disorder. As I write, autism spectrum disorders have spiked to 1 child in every 88. So when the phone rang at the ARI, Bernie would often answer it and ask many questions, if the person believed that they had found a cure or a clue. He never discarded anything, in stark contrast to my encounter with Dr. Rachel at the ACE in La Jolla. I once listened in when he spoke with a lady who believed that you could cure autism by lling crystal glasses to different levels and rubbing your ngers around the edges to create pure tones. Bernie put the telephone down and said to me, “It could be worth looking into. Music does create new neuronal wiring in small children, for example, or a mother singing to a child.” I had already mentioned to him that when a child with autism was in the chamber, if you played unfamiliar sounds such as whale songs, or bagpipes, the unresponsive child would often brighten up and look around.“Maybe new neuronal connections are being established,” Bernie pondered as he rubbed his whiskers.In those days, I worked on weekends. If I wanted to chat with Bernie, Sunday was the best day. No staff to answer the telephone, so he always did. I once asked him whether he took a day off and his response was succinct:“When autism takes a day off so will I.”Bernie, a $2.6 million donation and his ARI.Now, here is the most interesting of Bernie Rimland’s driving forces—to me at least. It was not about dollars or ego, not in the slightest. At that time, I was also friends with another Bernie, the renowned anthropologist, Dr. Bernard Aginsky. To avoid confusion between the two Bernie’s I will refer to him as Dr. Aginsky. He was in his late 90s at the time, as