Beautiful and moving story of parents who face their son's autism with a research and nonconformist attitude until they find the reasons for the pathology. It is one of those stories where filial determination and love are shaping the actions until they reach the goal that was somehow always in their minds: revert to the autism of their 15-month-old son.
“When the psychologist who was examining our 18-month-old son told us that she believed that Miles had Autism, my heart began to pound. I didn't know what that word meant exactly, but I knew it was bad. Wasn't autism perhaps a type of mental illness - perhaps juvenile schizophrenia? What's worse, I vaguely remembered hearing that this disorder was caused by emotional trauma in childhood. In an instant, all the illusions of security in my world seemed to fade away.
Our pediatrician had referred us to the psychologist in August 1995 because Miles did not seem to understand anything we were telling him. He had developed in a perfectly normal way until he turned 15, but then he stopped saying the words he had learned - cow, cat, dance - and began to disappear within himself. We assumed that his chronic ear infections were responsible for his silence, but after three months, he had truly retired to his own world.
Suddenly, our cheerful little boy could hardly recognize us even his little sister of 3 years. Miles, did not establish eye contact and did not even try to communicate by pointing his finger or gesturing. His behavior became increasingly strange: He dragged his head on the floor, walked on tiptoe (very common in autistic children), made strange sounds like gargles, and spent long periods repeating the same action, such as opening and closing doors or filling and emptying a cup of sand in the sandbox. Sometimes he shouted without comfort, refused to be held or hugged, and developed chronic diarrhea.
Then I learned that autism - or autism spectrum disorder, as doctors now call it - is not a mental illness. It is a developmental disability that is thought to be caused by an abnormality in the brain. The National Institutes of Health estimates that at least 1 in 500 children is affected. But according to some recent studies, the incidence is increasing rapidly. In Florida, for example, the number of autistic children has increased by almost 600 percent in the last ten years. However, although it is more common than Down Syndrome, autism remains one of the least understood developmental disorders.
We were told that when I grew up, Miles would definitely be severely disabled. That he wasn't going to be able to make friends, carry on a meaningful conversation, learn in a regular classroom without special help, or live independently. We could only hope that with behavioral therapy, we could perhaps teach him some social skills that he would never grasp on his own.
I had always thought that the worst thing that could happen to someone is to lose a child. At that time, that was happening to me, but in a perverse and inexplicable way. Instead of condolences, I receive looks of discomfort, inappropriate comfort, and the feeling that some of my friends no longer wanted to call me back.
After Miles' initial diagnosis, I spent hours and hours in the library, investigating the reason why my son had changed so dramatically. It was then that I came across a book that mentioned an autistic child whose mother believed that her symptoms were caused by a "brain allergy" to milk. I had never heard of that, but that thought was around my mind because Miles drank an unusual amount of milk - at least half a gallon a day.
I also remembered that a few months before, my mother had read that many children with chronic ear infections were allergic to milk and wheat. She told me, "You should eliminate those foods from Miles and see if his ears clear." I insisted, "Milk, pasta, cheese, and cereal. Cheerios are the only things he eats, if I eliminate them, he will die. of hunger. ”
Then I realized that Miles's ear infections had started when he was 11 months old, just after he changed from the soy formula to cow's milk. He had been taking the soy formula because my family had a predisposition to allergies, and I read that soy could be better for him. I had breastfed him until 3 months, but he didn't tolerate breast milk very well - maybe because I was drinking a lot of milk. There was nothing to lose, so I decided to eliminate all dairy products from their diet.
What happened next was little less than a miracle. Miles stopped screaming, and I didn't spend so much time doing repetitive actions, and by the end of the first week, he was pulling my hand when I wanted to go downstairs. For the first time in months, he allowed his little sister to take him by the hands to sing a song.
Two weeks later, one month after seeing the psychologist, my husband and I kept our appointment with a well-known pediatrician to confirm the diagnosis of autism. Dr. Susan Hyman asked Miles a variety of tests and asked us many questions. We describe the changes in his behavior since he stopped consuming dairy products. Finally, Dr. Hyman looked at us sadly and said, “I'm sorry. Your son is autistic. I admit that the issue of milk allergy is interesting, but I don't think I could be responsible for Miles's autism or his recent improvement. ”
Miles, surprised everyone
We were terribly discouraged, but as the days went by, Miles continued to improve. A week later, when I found him to sit on my legs, we made eye contact and he smiled. I started to cry, finally I seemed to know who I was. He had totally ignored his little sister, but now he saw her play and even got angry when she took things from him. Miles slept better, but his diarrhea persisted. Although he had not yet turned two years old, we took him to a special day care center three mornings a week and started a behavioral and intensive language program and individualized that Dr. Hyman had approved.
By nature, I am a natural skeptic, and my husband is a scientific researcher, so we decided to test the hypothesis that milk affected Miles's behavior. One morning we gave him a couple of glasses, and by the end of the day, he was already walking on tiptoe, dragging his forehead across the floor, making strange sounds, and exhibiting the other bizarre behaviors that almost We had forgotten. A few weeks later, the behaviors returned for a short time, and we discovered that Miles had eaten some cheese in the nursery. We were completely convinced that dairy products were related in some way to their autism.
I wanted Dr. Hyman to see how Miles was doing, and so she sent him a video of him playing with his father and sister. She called us right away to tell us she was completely surprised because she saw that Miles had improved dramatically. He told us, Karyn, if I hadn't diagnosed him myself, I wouldn't believe he is the same child.
I had to find out if the other children had had similar experiences, and for that I bought a modem for my computer, which was not something standard in 1995 and discovered a support group for autism on the Internet. A little embarrassed asked: Is it possible that my son's autism is related to milk?
The response was overwhelming, where had I been? Didn't I speak about Dr. Karl Reichelt in Norway? I didn't know anything about him. Paul Shattock in England? These researchers had preliminary evidence to validate what the parents had been reporting for almost 20 years: that dairy products exacerbated the symptoms of autism.
My husband, who has a Ph.D. In Chemistry, he made copies of the bulletin articles that parents had mentioned on the Internet and studied them in detail. As I explained, there was a theory that a sub-type of children with autism, break down the milk protein (case) in p Peptides that affect the brain in the same way as hallucinogenic drugs. A group of scientists some of whom were parents of children with autism had discovered compounds containing opioids a class of substances that include to opium and hero in the urine of autistic children. The researchers theorized that these children, or lacked an enzyme that normally breaks down the peptides into a digestible form, or the peptides, somehow, were infiltrating into the bloodstream before they could be digested.
In an attack of emotion, I realized that this made a lot of sense, since it explained why Miles developed normally during his first year, when he only took the soy formula. He could also explain why he wanted to drink milk later. Opioids are highly addictive, and even more, the strange behavior of children with autism has been compared many times with that of someone hallucinating with LSD.
My husband also told me that the other type of protein that was broken down toxicly was gluten - found in wheat, oats, and rye, and that it is commonly added to thousands of packaged foods. The theory might have sounded like hair brought to my scientific husband if he hadn't seen the dramatic changes in Miles himself, and remembered how Miles had self-limited his diet to foods that contained wheat and dairy. As far as I was concerned, there was no doubt that gluten also had to disappear from their diet. Even if I was busy, I had to learn to cook gluten-free meals. People with celiac disease are also gluten intolerant, so I spent hours on the Internet gathering information.
After 48 hours of being gluten-free and without casein, at 22 months, Miles made solid stools for the first time, and his balance and coordination improved markedly. A month or two later, he started talking - he said for example - "zawaff" when he meant giraffe, and "ayashoo" when he meant elephant. He still didn't call me "Mommy, " but he had a special name for me when I looked for him in daycare.
However, local doctors who saw Miles - his pediatrician, geneticist and gastroenterologist - still mocked the connection between autism and diet. Although dietary intervention was a safe and non-invasive approach to treating autism, until large controlled studies could prove that it worked, most people in the medical community didn't want to know anything about it.
So, my husband and I decided to become experts. We started attending autism conferences and calling and sending emails to European researchers. I also organized a support group for other parents of autistic children within my community. Although some parents were not interested in exploring the dietary intervention at first, they often changed their minds after meeting Miles. Not all children with autism responded to the diet, but eventually there were about 50 local families whose children were on the diet without gluten or casein and had had exciting results. And judging by the number of people on the Internet support lists, there were thousands of children around the world who were responding well to the diet.
Fortunately, we found a new local pediatrician who gave us a lot of support, and Miles was doing so well that I almost jumped out of bed every morning to see the changes in him. One day, when Miles was 2 and a half years old, he took a toy dinosaur to show it to me, and said, "Wook, Mommy issa Tywannosaurus Wex!" (Look mom, it's a Tyranosaurus Rex). Astonished, I held my trembling hands and said, "You called me Mami, " then he smiled and gave me a hug that lasted a long time.
When Miles turned three, all of his doctors agreed that his autism had completely healed. In the tests he had, he had an 8-month performance above his age level in the areas: social, language, self-help, and motor skills, and entered a regular preschool without any special education support. His teacher told me that he was one of the most pleasant, talkative and participatory children in the class.
Currently, at 6 years old, Miles is among the most popular children in her first grade class. He is reading at the fourth grade level, has good friends, and recently acted in a role within the musical work they set up in his classroom, and demonstrated great talent. He is deeply attached to his older sister, and they spend hours involved in the type of imaginative game ever seen in children with autism.
My worst fears never came true. We are terribly lucky.
But I imagined all the other parents who may not be fortunate enough to not know this diet. Therefore, in 1997 I started with a newsletter and an international support organization called Autism Network for Dietary Intervention (ANDI), along with another mother, Lisa Lewis, author of the book Special Diets for Special Kids - Special Diets for Special Children (Future Horizons, 1998). We have received hundreds of letters from parents from all over the world whose children have used the diet successfully. Sadly, most doctors remain skeptical, although it is better to have the guidance of a professional when implementing the diet.
I have continued to study the investigations that have emerged, and it is becoming increasingly clear to me that autism is a disorder related to the immune system. Most of the autistic children I know have had several food allergies in addition to their allergy to milk and wheat, and almost every parent in our group has or has had at least one problem related to the immune system: thyroid disease, Crohn's disease, celiac disease, rheumatoid arthritis, chronic fatigue syndrome, fibromyalgia, or allergies. Autistic children probably have a genetic predisposition to abnormalities of the immune system, but what, in itself, causes the disease to trigger?
Many parents swear that their children's autistic behaviors began at 15 months, shortly after receiving the measles, mumps, and rubella vaccine (in English MMR). When I examined evidence such as photos and videos to see exactly when Miles began to lose his language and social skills, I had to admit that he had coincided with his MMR vaccine - after which we had to take him to the emergency room with 40º fever F and febrile seizures.
Recently, a British researcher, Dr. Andrew Wakefield, MD, published a small study linking the portion of the measles vaccine with damage to the small intestine - which may help explain the mechanism by which hallucinogenic peptides slip into the bloodstream If it is discovered that the MMR vaccine certainly plays an important role in the onset of autism, we can find out if some children are at greater risk than others and therefore should not receive the vaccine or may have to be vaccinated at a later age.
There is other research under development that is giving us hope: Researchers from the Division of Orthopedic Diagnostics of the Johnson & Johnson company - my husband among them - are now studying the abnormal presence of peptides in the urine of autistic children. My hope is that a routine diagnostic test will eventually be developed to identify autism in very young children and that when some types of autism are recognized as a metabolic disorder, the gluten-free or casein diet has passed from the realm of alternative medicine to medicine. regular.
The word autism, which once meant so little to me, has profoundly changed my life. He arrived at my house as a monstrous guest who had never been invited, but eventually brought his own gifts. I have felt doubly blessed - one for the amazing good fortune of recovering my son and also for having been able to help other autistic children who have been evicted by their doctors and cried by their parents. ”
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