Biological Treatments for Autism and PDD Online > Chapter 12: Part I | Part II
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Following a different path. A child's documented recovery from autism
by Karyn Seroussi
I wish that there was more public awareness about the early symptoms of autism. Too many of my sentences seem to begin with the words, "when I look back," or, "in retrospect..." I know this is all too common among parents of autistic children.
Even if I did know what I was seeing, even if a scarlet "A" had appeared on Miles' forehead, I still wouldn't have gotten any useful advice from my pediatrician. This is a disorder in transition, its etiology only beginning to be understood. No one walked up to me and announced that Miles' early developmental differences were treatable with changes in his diet. His diet, for heaven's sake! Who would have believed something like that?
When our son Miles was born, in December of 1993, he was a cranky baby. Not colicky, just crabby and unpredictable. He never settled into a routine, he spit up so much that I had to change my shirt after nursing him, and he didn't like to be held when he was tired; he preferred to cry himself to sleep. We never knew when he'd wake up again though, he could sleep for half an hour, two hours, four hours, or longer, if we were really lucky. This went on for months.
I endured the nursing for 12 weeks and then switched Miles to soy formula. My pediatrician seemed surprised that I chose soy. When I told her that there were a lot of allergies in my family she gave me one of those looks that clearly said, "if you say so." I remember feeling slightly embarrassed, but I knew that milk was a common allergen, so why take chances?
Miles did better on the soy formula, although his nights were still terrible. He was one of those autistic children whose social and language development was normal for the first year or so before they regressed, and we had no way of knowing that we would ever be facing a problem greater that our own sleep deprivation.
At eleven months old, our little boy was getting ready to walk. He said "cat" and "fish," and liked to play peek-a-boo. He smiled at us when we played with him, waved "bye-bye" and clapped hands.
When he was almost twelve months old, at his doctor's suggestion, we switched him to cows' milk and it seemed that nothing changed. Then the ear infections began, one after another. The first one was accompanied by a rash on the scalp, face, and neck. I went back to the doctor. Something viral? A case of Roseola? She gave him antibiotics and told me to stop using fabric softener. My faith in her began to ebb. The rash had coincided with the fever. It didn't occur to me at the time that the problem might be related to cow's milk, but I knew it wasn't a matter of laundry. The flushed cheeks persisted, on and off, for months, while Miles was put on a prophylactic dose of amoxicillin for his recurring ear infections.
A parent knows when something is wrong, even when it can't be put into words. When a child learns language, his gains should be progressive. On the day that Miles had tubes inserted in his ears, at fifteen months old, he used the word "fish" for the last time at the aquarium in the doctor's waiting room. A month later, he no longer clapped hands or waved "bye-bye." Contrary to the otolaryngologist's assurance that Miles' language would now "explode," more than ever he appeared to be deaf.
One day, exhausted and late for work, I began to weep in the regular pediatrician's office. I told her that I didn't think she was taking my concerns seriously. I needed to know what caused this constant illness that was making our lives were so difficult. She told me, sarcastically, that "parenting can sometimes interfere with our work schedules." I then did the smartest thing I ever did as a parent. I scooped up my son and found a new doctor.
The new pediatrician didn't know much about developmental delays, but she agreed to help us find out what was going on. With the exception of something she called "chronic non-specific diarrhea," Miles was physically normal but he was an odd kid. He had a very long attention span for certain activities, and resisted interaction. Ignorant of the symptoms of autism, I described him as "in his own world." I again expressed my concern that he didn't have any expressive or even receptive language. I had noticed that he didn't recognize the word "cup," which was his favorite thing in the world. In fact, he drank so much milk that for financial reasons we had to restrict him to about 70 oz. of milk per day ‑ over half a gallon! The doctor was concerned that Miles had lost the few words he had learned. She gave us a referral to a speech pathologist and a child psychologist.
On July 12, 1995, I found myself in the emergency‑room at midnight. Miles had a high fever and febrile seizures, only eighteen hours after his DPT inoculation. Were the two related? The doctors didn't know. As he lay limply in my arms, exhausted from two hours of screaming, Miles gazed into my eyes for a long, long time. I marveled at his gaze - he seemed to be recognizing me for the first time. How could that be? I realized how odd it was that I found his scrutiny to be unusual. When had he stopped making eye contact?
At nineteen months old, he was seen by a developmental pediatrician. There was a word for what Miles had: autism. We began to see the horrible truth of the diagnosis. Miles would sit in the sandbox for forty-five minutes pouring the same cup of sand, or putting together and taking apart the same two pieces of a toy. He never pointed to objects or brought us toys to look at.
Our lives began to seem as though they were spinning out of control. When my husband and I realized the implications of this diagnosis we could barely function.
Then I read somewhere that a child was misdiagnosed with autism because of a milk allergy. His mother, Mary Callahan, had written a book, describing this as a "cerebral allergy". I was skeptical, but I went to the library for a book about allergy and it mentioned the possible link between ear infections and milk. It also mentioned that children sometimes crave milk if they have an allergy to it. Then my mother-in-law reminded us that my husband had begun to talk at three after she took him off milk products.
One morning I put down my library book, Doris Rapp's Is This Your Child, and called Alan, my husband, at work.
"Honey, do we still have any soy formula, or did we give the last few cans away?"
We removed dairy from Miles' diet when he was 20 months old.
Surprisingly, he accepted the soy formula and the rice milk I found at the supermarket. We didn't know what would happen but there was no mistaking his reaction to this change. On the first night, tired whining replaced the familiar sound of screaming. The next day, for the first time ever, we awoke to the sound of Miles playing in his room. His crying was greatly reduced that day, and he made more eye contact than he had made in a month. The unfamiliar sound of babbling made us realize how little vocalizing Miles had done. Our babysitter was not immediately told about the reason for the change and she remarked emphatically about the differences in him.
When Alan came home from work on the third day and watched Miles reluctantly participate in a game of "Ring Around The Rosy," he made a pronouncement: Miles was to have no more dairy. No milk, no butter, no casein, no whey, no way.
The developmental pediatrician listened patiently while we raved about his improvement in the two weeks since he had stopped having milk. She agreed that he did seem to be doing well in some areas and suggested that we find an aggressive treatment program for him. However, her diagnosis was still autism. We later discovered that she had heard about this connection before, from "crackpot" parents and researchers, but said nothing to us at the time. She seemed to be taking us seriously, however, since my husband was a research scientist with a Ph.D. in chemistry. She simply agreed that if the diet seemed to be helping, it couldn't hurt to continue.
At 21 months, I noticed that when Miles had a cup of soy formula before his nap he woke up cranky and had small tremors for a few seconds. I restricted him to rice milk. We saw a neurologist at this time who listened attentively to my opinions and asked if I could give Miles some milk and soy, and then try to document any behavioral changes on videotape. Based on his observations he seemed amazed that Miles had been diagnosed with autism, and was skeptical about the original diagnosis. I could see why, since Miles had improved so much, especially in the area of social interaction. I could not bring myself to do what he had asked and give milk to Miles, however. We knew what we were seeing, and his progress was too important to us.
We had implemented a home‑based behavioral program to which Miles was responding well, and he began attending a special nursery school four mornings per week. We agreed that these were a factor in his recovery but we knew they would not have been effective while Miles was drinking milk. In one month, Miles had gained over six months in his fine motor skill evaluation, and lost several points on our (his parents') application of the CARS test, indicating a reduction in autistic behaviors. He was rapidly gaining spontaneous appropriate language and social skills, his eye contact was now almost completely normal, he pointed to everything to learn its name, he brought us objects just to share them with us, and he watched his sister carefully for new cues about behavior.
We looked for a sympathetic allergist. Some other parents of autistic children recommended one who agreed that some foods can affect certain children even when they do not show a classic allergic immune system response. He was somewhat helpful. Miles had a reaction to some molds, but only a very minimal reaction to foods, among them egg, corn, wheat, soy, oats, and fish. There was no reaction to milk or rice. I was surprised - why would Miles have such a problem with milk if he did not have an allergy to it?
The doctor explained that he believed there were two types of allergy. In the primary type, symptoms such as hives, swelling, or difficulty breathing were common reactions. I remembered that my nephew had such a problem with peanuts - my sister had to keep an epi-pen (a source of the drug epinephrine to inject in the case of a severe allergic reaction) with him at all times. In the secondary type of allergy, a different part of the immune system seemed to be affected, and the response to such allergens could be headache, diarrhea, disorientation, irritability, or even depression or hyperactivity. He suggested a rotation diet.
A rotation diet is based on the principle that one can eat allergenic foods every four days or so with a lesser reaction then if one ate them every day. In addition, after three days without the food, one was more aware of allergic reactions when it was introduced.
I sat down at my computer and wrote up a weekly schedule of foods that Miles could eat - from a list that already seemed to be rather short.
During the rotation diet, we noticed that Miles definitely no longer tolerated soy. Chinese food gave him hives (soy sauce) and soy formula gave him a severe diaper rash. We also found that corn in any form made his diarrhea worse. We already knew that citrus, grapes, and most fruits gave him a rash, (which was true of our daughter at that age), so we were running out of food choices. To top it off, Miles was very picky about food tastes and textures.
Still, our biggest question was still unanswered: why was Miles getting better from autism after the removal of dairy from his diet?
In November we had a behavioral consultant from California take a look at Miles. He agreed that he had a lot of autistic characteristics and some autistic-like delays, but admitted to being baffled by his social behavior. When we explained about the dairy he said he was mystified, and suggested that we look into galactosemia and other metabolic disorders.
I bought a modem and got on the Internet, hoping to find more information. Within 48 hours I was bombarded with the news about casein/gluten intolerance and autism. I was overwhelmed.
To be taken seriously and to discover that Miles shared his case history with others was breathtaking. Parents like Lisa Lewis and researchers like Paul Shattock made it easier for me to understand that the problem might be caused by the improper breakdown of milk and wheat proteins into opiate-like neurotoxins. Paul suggested removing gluten from Miles' diet. Gluten is a protein found in wheat, oats, rye and barley. It was abundant in all of Miles' favorite foods, and I was horrified to discover that wheat is added to most packaged products as a filler, or to keep foods from sticking together. The prospect of starting a gluten-free diet seemed daunting, but it would be worth it if only to stop the diarrhea. I joked, via e-mail, that if Miles had a formed stool I would buy Paul a bottle of champagne.
We took Miles off gluten in November, when he was twenty-three months old, or so we thought. After a few days I realized that the Rice Krispies I had been giving him contained barley malt - a no-no. Then, within twenty-four hours of removing that food, we were amazed to see his bowel movements normalize.
Miles' gastroenterologist was mystified. He had been given the gluten/gliadin antibody tests and did not prove positive for celiac disease, and yet she saw him improve after the removal of gluten. She had even seen his diapers beforehand - an odious mass of sickly-smelling slush. I later found out that many autistic children seemed to have a form of celiac disease without testing positive to the gluten antibody test. When they were further tested with a small-bowel biopsy, they were usually diagnosed with celiac disease based on their flattened intestinal villi and gut permeability.
Shortly thereafter, without really understanding why, we started giving Miles low doses of nystatin. One of the parents we knew told us that it had helped her son, but was unsure about the reason. After ascertaining that the drug seemed safe, we asked our doctor for a prescription. During this time, his "postural insecurity" greatly improved. Later, after hearing Dr. Shaw speak at a conference and understanding about the Candida theory, I wondered about that. Was the lack of balance caused by the gluten or the yeast? I couldn't say, but Miles soon began to climb stairs on two feet and to try using a seesaw. He lost the drunken gait that had characterized his movement for so long. He remained on nystatin for over two years, and continued to take probiotics such as acidophilus and bifidus.
After a few weeks, we tried a "multiple food elimination diet." This meant that we cut Miles' diet down to the very few foods that seemed the least likely culprits: kosher chicken, potatoes fried in canola or safflower oil, white rice, and tapioca, and then added new things back, one at a time.
We soon discovered that other foods also gave him loose stools, such as eggs and pear juice. By the time we had tested every food at least twice for physical or behavioral reactions, Miles was reduced to the following diet: rice, potatoes, chicken, pork, sesame seeds, macadamia nuts, teff, arrowroot, and tapioca. Within a few months of his being on the diet we discovered that the removal of the other foods had made him even more sensitive to them. Corn was bad and soy was worse, but even the smallest trace of gluten would result in several days of marked regression and diarrhea.
At that point we became very careful, almost fanatical about Miles' diet. If we accidentally dipped a spoon from the pot of wheat pasta into the pot of rice pasta, we threw away the entire batch and started again. Everyone in the household, including our three-year-old daughter, learned to wash their hands after touching bread. Miles had a separate toaster, a separate shelf in the pantry, and sat at the end of the table where crumbs were less likely to fly from our hands.
Our friends and family might have thought us crazy, but we believed that the fact that we were doing the diet 100% was important to his success. We knew other children who responded to the diet whose parents weren't as careful, and their progress was often uneven. Miles' growth continued to soar.
Although we couldn't swear by it, three daily tablets of DMG seemed to improve his language function; he seemed somehow "clearer." At twenty-eight months, he began using three-word combinations. By two and a half, he had a mildly rote manner of speaking, but his sentences were longer and more meaningful, such as "look Mommy, I see a slide." His voice had a sing-song quality to it too, still residual from the autism, but he was highly motivated to communicate.
Miles had finally discovered his sister, only eighteen months older and eager for a playmate. They began to play games of imagination, such as "zoo," "dolls," and "dinosaurs." His imaginary play began as a replay of the same scene, usually involving a carnivorous dinosaur attacking everyone else. As the months went by, however, he took great pleasure in longer and more complex storylines which were always changing. There arrived a day when his sister began to let him take the lead in the play because his ideas were so exciting and different.
By the time Miles was three, his evaluation revealed that he no longer qualified for special education services. In fact, his language tested at a level over eight months above age level. Socially and developmentally, the teachers in his "integrated" classroom found him to be one of the most advanced in the class.
If his special-education teachers were skeptical about my use of the diet at the beginning of the year, they certainly were not by graduation. They had all seen the dramatic changes in Miles, as well as having seen the frightening deterioration that followed the rare occasions when they slipped up and let him get hold of a stray pretzel or cookie. One of them told me that she had never seen a child recover from autism before, and that she would always tell other parents of autistic children to try the intervention.
Another of his teachers told me that after twenty years of working with autistic students, she didn't want to work with any children whose parents refused to at least try the diet. On the days when Miles ate a problem food such as corn, she could always tell without being told, and would pronounce her session with Miles "an utter waste of time." Two of her students, Miles and a younger boy named Bobby who was following a similar path, had opened her eyes to a whole new avenue for recuperation.
The regular nursery school class that he attended twice a week was a good indication of Miles' functioning; he was very well-liked by the other children, who liked to do "whatever Miles was doing." These were "typical" children, and I was pleased to see how well he fit in on the days when it was my turn to assist in the classroom. His teacher assured me that he adapted very well to the rules and routine of the classroom, and was surprised by my anxious questions when I came to pick him up, such as "how did things go today?"
Because of the toileting delays typically associated with autism, potty training had seemed like such a long shot that we didn't push it. We were shocked to hear the toilet flush one day and see Miles walk out of the bathroom with a dry diaper in his hand. A few days later, after dragging me excitedly to the bathroom, Miles pointed out his first bowel movement. Afterwards, as we walked into the living room, Miles took my hand and said, "Mommy, I'm so proud of myself!"
At three and a half, Miles was so different from the child he had been that the past year seemed like a displaced memory, or a fragment of a movie about someone else's life. He was a charming, loving, intense child with an impish grin and a great imagination. He adored his family, readily made new friends, loved to swim and draw pictures, and insisted on picking out his clothes and dressing himself. He expressed himself well and even had a rather sophisticated sense of humor.
Our only reminder of what seemed like an impossible past was Miles' limited diet. He did not have potty accidents so we got a little bit adventurous with new foods, but Miles still had problems with the same list that he had reacted to as a baby. Stomach aches and diarrhea were the usual result, with occasional headaches or trouble sleeping. Although several people suggested EPD (Enzyme Potentiated Desensitization) injections to widen his diet, we decided to wait until Miles was older.
Miles is in a regular school now, with no problems whatsoever. He knows what he can eat, and is very cautious about touching other people's food. If I give him something unfamiliar, he asks, "Is this okay for me?" Miles is a good sport about it - he says "yay, French fries!" like a child who is not seeing them for the fourth time that week. We are resigned to the fact that he may never be able to eat casein or gluten, and that his diet may always be as limited as it is today. However, he gets enough protein and carbohydrate, he is supplemented with vitamins, minerals, calcium, essential fatty acids and amino acids, and the level of his functioning is so good that this seems a small price to pay.
I am one of the lucky parents, I know that. When I start my sentences with "when I look back," I can finish them with thoughts like, "it was a good thing we got such an early diagnosis," or "thank goodness for the Internet." Early intervention was the key for our little boy. Not just treatment of his symptoms, but the treatment of his immune system and the cause of his problems. Miles was young, and his nervous system had not sustained enough permanent damage to impair him for life.
Do I think that every child will respond as well as he did to the diet? Of course not. I have only seen three others in the past two years, all of them under three years old. But hey, that's four children in my city who do not have autism and that ain't bad. In addition, I have seen dozens of older children whose functioning improved well beyond their parents' expectations with the implementation of this diet, and that seems to me to be as good as a million dollars worth of special education.
My advice to parents is to look to the cause first, and treat the symptoms later. Find out as soon as possible if you can strengthen your child's immune system and improve his functioning. A gluten and casein-free diet, vitamin B6, MCT oil, DMG, and essential fatty acids are several safe things to try. Definitely test and treat for yeast and anaerobic bacteria, since it is so prevalent in autistic children and may be causative to the other problems. It doesn't matter how old they are - Donna Williams didn't discover dietary intervention for her own autism until she was in her twenties, and it greatly reduced her anxiety and improved her ability to function and interact with others.
It used to break my heart when I saw a young child with autism, perhaps one that craved milk the way Miles did, and his parents told me that they did not want to try a dietary intervention. I would knock myself out pestering them and explaining it to them, but finally learned that people won't try new things unless they're ready. Unfortunately, a developing brain is not always that forgiving - certain behaviors are meant to be learned during certain stages of development.
For the sake of an autistic child who had terrible diarrhea, I once even found myself begging his mother to take gluten from his diet. I actually used the words, "please, I am begging you." It was very uncomfortable, and I felt embarrassed when she said no. Two years later I found out through a mutual acquaintance that he had been diagnosed as "failure to thrive," and she finally tried the diet with great success. I tried to imagine how awful she must have felt. It's one thing not to have the information, but another thing entirely to have it and not try it out because of intimidation or fear of the unknown.
Perhaps some of my frustration comes from my own fear of what might have happened if we had not pursued the course we did. I suspect that with my own arrogance and skepticism, if my doctor hadn't told me to, or if I hadn't discovered this for myself, I might not have tried the diet based on hearsay.
Another thing I've learned is that there is still a lot to know about the biological processes that lead to the symptoms of autism. I have spent a long time formulating theories which make a lot of sense to me until the next conference I attend, the next parent I speak with, or the next research paper I read. I suspect that Miles' vaccinations either introduced a virus that started the problem, or else aggravated his already unstable immune system. I strongly believe that the liberal amount of antibiotics he was given either triggered or contributed to the outcome. All I can say for certain is that a breakdown in the immune system certainly does seem to be involved, as well as the abnormal production of substances which are clearly not present in the urine of normal test subjects, and which can disappear after implementation of a gluten and casein-free diet.
Therefore, tempting though it is to assure parents of newly diagnosed autistic children that I have all of the answers, I usually just share Miles' story, or give them a copy of a paper I wrote, entitled "Frequently Asked Questions About Dietary Intervention For Autism and Other Developmental Disabilities" and lend them one piece of advice before stepping back: try whatever you have to try so that you won't spend the rest of your life wishing you had started sooner. (Continue to Part II.)
Buy The newest version (2002) of this book online!
Biological Treatments for Autism and PDD Online > Chapter 12: Part I | Part II