Biological Treatments for Autism and PDD Online > Chapter 11: Part I | Part II | Part III
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Managed recovery from autism and ADD: One family's journey
By Pamela Scott
Introduction
My husband and I were in our late twenties when we decided to start a family. Excited about the prospects of becoming parents for the first time, we were totally unprepared for the events that took place which would change our lives forever. We were certain of two things when we planned our new family: we were going to produce great children and they would be loved beyond belief.
Well, we did produce great children--two of them in fact. And they are certainly loved with all our hearts. What we had not planned on, not even thought about for more than a fleeting moment, was the possibility that something would be different about our babies; that they wouldn't develop like other "typical" children. And we certainly could not have predicted that not just one, but both of our children would have disabilities. This reality was never part of our dream, our vision, for our family.
Instead of experiencing the joy of watching a child grow and learn, we felt fear and anxiety as we agonized over every developmental milestone that our children did not meet. As we compared our children to our friends' children, we became angry. Angry that our lives were different. Angry that physicians and therapists didn't have the answers to our questions. Angry that the services and programs available did not meet our children's and family's needs. Angry that we were supposed to just accept our children's disabilities and go on with our lives. Just plain angry! But out of that anger came the energy we needed to fight for our children. We decided to search for our own answers, to see what researchers were working on. We decided to find our ownways to help our children be the best that they could be. We decided to rely on our ownjudgement of what was right for our family. We decided to not accept the standard form of medical treatment for our children's disabilities. We took responsibility and control of our family's future.
With this control and responsibility came extreme skepticism and lack of support from most physicians and therapists. What we proposed in the form of treatment for our children was considered by many to be alternative, extreme, and controversial. Nonetheless, we felt it was our best chance to enable our children to become independent, self-sufficient adults. We were willing to take the risk. It was a risk that would have huge pay-offs if it was successful. And it was for our family. We would have never forgiven ourselves if we hadn't at least tried these interventions: these controversial, alternative treatments. Yes, they took an extraordinary amount of time and effort. And yes, our lives were certainly anything but normal during the initial stages of implementation, but we managed. Sometimes we managed quite well and sometimes not, but it wasn't impossible.
I would like to share with you our family's journey. It wasn't easy and there were many times when we doubted our decisions. But our sons who had been diagnosed with autism and attention deficit disorder are entering kindergarten and second grade this year without an educational label. They will both be in a regular education classroom. They do not require an aide or for that matter an individualized education plan (IEP). My husband and I believe, beyond a shadow of a doubt, that this would not have been possible without all of the interventions we chose for our children.
I know all families will not make the same decisions that we did for our children; every family and child with a disability is unique. I also recognize the fact that not all children with autism and attention deficit disorder (ADD and ADHD) will benefit as significantly as ours did from these types of interventions. But I do want to encourage you to read carefully the information presented in this book and give it due consideration. It changed my family's life.
I would now like to discuss in detail our journey with our first child Alan who had attention deficit disorder and then our second child Taylor who was diagnosed with autism.
Alan
Alan was very blue at birth, which concerned us somewhat, but he recovered quickly once the nurse gave him oxygen. I was able to hold and nurse him shortly thereafter. He spent his first night curled up next to his father on a cot beside my hospital bed. All things considered, the whole experience went relatively smoothly. We were dismissed from the hospital ten hours after the birth of Alan, our beautiful, 8 pound baby boy, ready to embark on our new life as a family.
We knew to expect a lot of crying from the latest member of our family; newborns do that. And we knew that lack of sleep would now be a part of our lives; this was also part of caring for a new baby. What we didn't know, because this was our first child, is that babies typically sleep for more than an hour at a time, that they shouldn't throw up almost as much as they eat, that colic doesn't mean that they scream for hours on end every day, and that they typically don't need to be in constant motion to not cry, at least not for the majority of a twenty-four hour period.
Ten days after his birth, we took our son to the physician's office. We were reassured that all babies cry and were told that our son could possibly have colic. I barely touched on the fact that we were walking, rocking, or swinging our son in an effort to calm him almost all of his waking hours, which were plenty.
I decided not to go back to work at the end of my maternity leave and opted to stay home and care for Alan.
At six months of age, he still wasn't sleeping like we knew he should. He wasn't throwing up any more, but he was drooling excessively. The constant screaming and crying that resulted in us walking, rocking, swinging, and bouncing him many hours every day was replaced by loud vocalizations and constant motion on his part. By six months of age he could navigate a walker anywhere he wanted to go. We referred to him as a very "busy" child. He was never still!
While we knew Alan wasn't like any of our friend's children, we didn't really know how to articulate these differences to the professionals. He wasn't behind in his development, just different. We didn't know how to convey to them that there must be some unknown medical reason for Alan's peculiarities. Consequently, we were never referred to the services and supports we needed. We continued to attribute all of his "odd" behaviors and any developmental deviance to a visual impairment, which we were unclear about because our physicians did not give us good information. We allowed his vision to become the scapegoat. It would take the birth of our second son for us to start putting the developmental puzzle pieces together in order to get the intervention both of our children needed.
When Alan was eight months old, he was prematurely given his fourth DPT shot by the clinic nurse. It had only been five weeks since he had received his third DPT shot and there is supposed to be a minimum of eight weeks between vaccinations. I didn't realize at the time that this shot should not have been given. I vividly recall the nurse taking Alan's immunization card and "whiting out" the information that she had logged about this DPT vaccination. I thought she put the information in the wrong place and was making a correction.
One of the problems this correction caused was that our son received one too many DPT vaccinations. This fourth vaccination was never logged on his immunization card. It never occurred to us that the nurse had made a serious mistake. Not only did Alan receive a DPT vaccination three weeks prematurely, he also received an extra DPT vaccination eight weeks later because the nurse, covering up her mistake, falsified his immunization card! Quite frankly if I had known of the mistake at the time, I am confident I would not have understood the significance it would make in our son's health. We simply did what we were told and believed everything the medical professionals told us. That in itself is amazing given both my husband's and my own personality.
Prior to this, Alan had never run a fever or even been cranky after receiving a DPT shot. But it wasn't going to be so easy for him this time. He went to sleep very easily and early that night, which was highly unusual for him. Concerned because he hadn't put up his typical bedtime fight, I went to check on him after a half hour or so to make sure nothing was wrong. I found him arched back, shaking, and running a pretty good fever. Terrified, I screamed for my husband Bill to come and help me. We sponged him off to lower the fever and the convulsions stopped almost immediately. Alan was now awake, alert, and somewhat cranky.
We called the doctor's emergency number and were asked about Alan's current status. When the doctor learned that he now appeared to be fine and was only running a low grade fever, he asked what fever reducing medication I had administered. I sheepishly told him none. While I certainly kept some on hand, Alan had never needed any due to a DPT vaccination or, for that matter, any illness. I was chastised and told that Alan's convulsions were due to the fever and to administer the fever reducing medication immediately and continue giving it for the next 24 hours. We were asked to bring him in the next day for a full checkup, which we did.
Feeling very guilty and responsible for his reaction, we stayed up for the remainder of the night to keep a close watch on him. We took him to the clinic first thing the next morning. During this visit, they made it extremely clear that Alan's reaction was due to the fact that we did not give him fever reducing medication. If we had understood the vaccine information we received, we would have known to administer the fever reducing medication. We were never informed that they had incorrectly given our son a DPT vaccination three weeks prematurely. They never even reported Alan's reaction to the proper agencies. This "error" went undetected by us for over three years. I guess the hardest thing to deal with is the fact that the clinic made us feel responsible for Alan's fever and subsequent convulsions, when they were negligent.
In spite of receiving one too many DPT immunizations and one of those being given prematurely, Alan continued to grow and develop. His development had always been somewhat different and the truth of the matter is, the unfortunate vaccination mistake didn't change any of his outward behaviors. (We now feel confident that these vaccination errors intensified his unusual immune system responses.)
Alan never learned to crawl but was pulling up and "cruising" by the time he was seven months old. And by the time he was eight months old, he was walking very well and into everything. He had also mastered climbing out of his crib, so bedtime was literally a nightmare. When he did stay in the crib, it was to bounce it across the floor or bang it into the wall. I was going crazy!
The other moms I knew could place their child on a blanket on the floor with a few toys and actually get some things done around the house. But not me! These other moms also had children who took naps. I didn't dare let Alan sleep during the day or we would be up all night, instead of the luxurious three maybe four hours of uninterrupted sleep we were getting. Of course this sleep came after Alan had put up at least an hour and a half worth of protest. It wasn't that he wasn't tired or sleepy; but he just couldn't be still or relax long enough to allow himself to sleep. These horrific sleep patterns continued until Alan was 4 years old. This child had endless energy and we were exhausted.
If nothing else, Alan was consistent. His strong preferences about everyday routines were carried over into his eating habits as well. I had been making my own baby food for Alan, but he was very particular about what he would eat. His favorite food groups, after nursing, were dairy and grains. He enjoyed only a few other foods and this disturbed me somewhat because he was on the low end of all the growth charts every time we went to a well baby visit. I thought perhaps if he consumed a wider variety of foods it would help him to gain weight. How much he ate wasn't the problem, he had a sufficient appetite. But his strong attraction to certain foods bothered me.
Alan tolerated the rice and barley baby cereal I fed him, but he loved cottage cheese, American cheese, mashed macaroni and cheese, yogurt, scrambled eggs, applesauce, bananas, and almost any kind of bread or cracker. I had no way of knowing at the time that these very foods were responsible for a large portion of his hyperactivity and sleep disturbances (even though we didn't call it hyperactivity back then). We were unaware that Alan had been plagued with significant food allergies since birth and that a majority of his atypical behavior and development could be explained by these allergies.
I was having a difficult time keeping up with Alan as I entered into my second pregnancy. He seemed to be getting more restless and noncompliant. We attributed this to the terrible two's and the expectation of a new baby. I can remember when the new baby started moving. It was so different from Alan's movement in the womb. While the new baby was gently stirring, I would recall how Alan had literally almost broke my ribs a few weeks before delivery! In fact, he had been a very active baby even before he was born.
And so, five months into focusing on Alan's needs, I gave birth to our second son, Taylor.
(We would later learn that while Alan did not have elevated fungal metabolites due to yeast, he did have elevated levels of anaerobic bacteria products commonly found in children who have been diagnosed with Attention Deficit Disorder and Attention Deficit Disorder with Hyperactivity.).
Taylor
The first year of Taylor's life, we watched him experience a "typical" development. In doing so, we realized how atypical Alan's development had truly been. Taylor actually played with his baby toys and could entertain himself. He was so much calmer than Alan that when we looked back on Alan's first two years of life, it was hard to believe we had survived.
Taylor continued to grow and become his own little person. He was blossoming. He had a wonderful sense of humor, could follow simple instructions, and by one year of age was able to combine a few words, "mama up, want down, go bye-bye, I love you, want more." And he was proficient at making farm animal sounds upon our request! Like his brother, he was an early walker, mastering this feat at 10 months of age after a short stint of belly crawling.
When he was approximately 10 months old, I stopped breast feeding him (actually he was just not interested in nursing anymore)and was having a difficult time finding a formula he would drink. Against the advice of our new family physician, I began to give Taylor whole milk. He just would NOT drink anything else (or so I was inclined to believe at the time).
Within a few weeks of adding whole milk instead of a formula to his diet, he needed a round of antibiotics to clear up an upper respiratory tract infection. This would be the first antibiotic in a long line of prescriptions that Taylor would receive for his repeated infections. Though the physician was aware that I was giving Taylor whole milk (occasionally Taylor would tolerate the Carnation Good Start formula), the correlation between the increase in milk products and subsequent infections was never made.
Over the course of the next year, Taylor was sick more often than he was well. We were told he had common upper respiratory tract infections. He looked and felt terrible most of the time. In fact he was sick so often, the physician began writing Taylor's prescriptions to be refilled without an office visit, for our convenience. In spite of feeling ill most of the time, Taylor continued to develop typically, for a while.
As you know, when a child doesn't feel well it can be a stressful event for the child and the family. It was very distressing to have a toddler who was constantly sick and it began to trouble me deeply that we could not find the cause of Taylor's ever increasing upper respiratory tract and occasional ear infections. The antibiotics being prescribed were becoming less effective, more potent, and quite expensive.
Between 10 months and 22 months of age, Taylor received 7 rounds of antibiotics. He began developing dark circles under his eyes and a constant wheezing sound in his chest. At diaper changes, we began noticing that his urine had an odd musty smell to it. He began to have consistent loose stools that often contained mucous, but it was not diarrhea. His genital area would be VERY red at times and as soon as his diaper was loosened at changes, he would grab his reddened genitalia. (Dr. Shaw's note: all of these symptoms are characteristic of intestinal yeast overgrowth.)
A significant sleep disturbance was emerging as well. He started having difficulty going to sleep and began waking up at least four times in the night shaking and crying pitifully. He would literally gulp down one or two glasses of water as fast as he could and then fall back asleep. He didn't seem to urinate sufficiently for the amount of fluid he took in either. He started to ignore our requests and stopped following simple commands. He became very cranky, tired, and agitated most of the time. We thought he was starting the terrible two's somewhat early when, in fact, he was changing in a different way.
Between taking care of a sick toddler who was up several times a night and trying to keep up with a child who slept very little and was extremely energetic (hyperactive), I was beginning to feel overwhelmed again. I knew in my heart of hearts that something was going on with my children, I just couldn't put my finger on it.
While Alan was making definite progress in many areas of development, we still had areas of concern about other aspects of his personality. He just never sat still and played appropriately with toys. He was constantly in motion: running, rolling, spinning. He was frequently making this odd "p-shoosking" sound. He had also begun to ask us questions repeatedly. (We would answer his question and two to five seconds later he would ask it again. He would continue asking, sometimes to a point of breakdown, his and ours.) He was grinding his teeth down to nothing and compulsively biting the skin around his nails. He was obsessive about insisting on sameness in household routines and he was becoming very disruptive. He felt the need to empty everything in a closet, toy box, drawer, cabinet, whatever, into a pile in the floor. It didn't matter if you were visiting someone else's home either; if the urge came over him, it was done.
In addition to this, he was becoming aggressive toward his brother. I couldn't leave Taylor unattended in the same room with Alan for fear he would hurt him. It wasn't that he didn't love his brother or get enough one-on-one attention from his father and I either. (This had been suggested to us several times when we would discuss our concerns with family, friends, and professionals.) Alan simply couldn't control himself. He was having trouble listening to us at home and his preschool teachers were having difficulties getting him to following directions at school as well, even though he was an incredibly bright little boy.
I recall visiting with a friend from church one day about Alan's behavior. It was immediately after he had consumed a cup of red fruit punch in Sunday school. I never purchased this brand of punch, preferring 100% juice. Alan was literally climbing the walls within 15 minutes of drinking it. Needless to say, we hurried home from church. By the time we got home, Alan was extremely agitated. He started rolling on the floor and making odd vocalizations. He was unable to focus and could not control his emotions. Fortunately, my friend had heard about the dyes and preservatives in foods causing these types of adverse reactions in some children and shared this information with me.
This was news to me and I was skeptical. I was also desperate to find answers about my son's behavior because I didn't feel like an effective parent. I decided to put this newfound knowledge to the test. Not believing food could actually cause this type of a reaction, I purchased the same brand of punch Alan had that day at church. I gave it to him for lunch. Our afternoon was not pleasant!
Once again, he exhibited the same type of reaction: rolling on the floor, odd vocalizations, agitation, and emotional distress. I was clearly shocked that food could cause my child to behave in such a fashion. With that seed being planted, I began to wonder about what else food could do to effect behavior and health. Could there be a connection between Alan's strange behavior and other foods? Could Taylor's chronic illnesses be allergy related?
I didn't have to wait long before I had my first opportunity to visit with our family physician on this topic. Taylor had developed yet another infection. This time when I went to the physician's office, I was armed with a list of questions regarding food allergies and illnesses. I was told Taylor's chronic infections had absolutely nothing to do with food allergies. All children catch several colds their first two years of life which easily lead to the secondary infections Taylor was experiencing. I was also told that food dyes were safe and did not in any way affect behavior in children. END OF CONVERSATION. At least with him anyway.
I didn't feel confident pursuing the matter any further and left with yet another prescription for antibiotics. I thought his response was a little too emotional and the finality with which he made his claim somewhat disturbing. One thing was for sure, Alan would not be ingesting any fruit punch or other foods that contained colors or dyes even if the physician believed there was not a connection between food, allergies, and behavior!
Taylor's development was typical up until he was 15 months old, with the exception of the constant infections. Since his birth, we had the good fortune to participate in a Missouri Department of Education Program called "Parents as Teachers". The program assigned us a parent educator that came to our home for routine visits. The parent educator distributed parenting and educational materials, administered a developmental screening, and documented the findings. Taylor met or exceeded all expectations on each of these screenings until he was 17 months old.
During this particular home visit, the educator asked me about imitation, or the emergence of it, in Taylor's play. I really had to think hard to remember if I had seen him doing anything like that in awhile. I couldn't confidently answer her question. At 17 months of age, this type of play should be developing and she told me to watch for it over the coming summer. This was in May and her next scheduled visit would be in the fall, when the school year started. We would not have to wait that long to discover that Taylor was not on track.
My inability to confidently answer the educator's question tormented me. I began to mentally go over Taylor's development and note the changes in his behavior. Taylor had certainly started communicating early. He had begun using words and putting them together precociously. But he just didn't seem to have the desire to talk anymore or to participate in our family. When I would mention this to family members and friends, I was cautioned not to compare my children to one another. Meanwhile, Taylor continued to withdraw and I was scared.
By the time Taylor was 18 months old I was becoming increasingly alarmed. While I was watching for him to start imitating in his play, I noticed how differently he had started to interact with his toys. It wasn't the same type of play he had exhibited several months earlier and he would throw an absolute fit if you interrupted him or tried to play with him. By the time he was 21 months old, it appeared to me that Taylor was purposefully ignoring my simple requests to interact. Then I began to question his hearing.
I discussed this with my husband and we felt like it was certainly a possibility worth pursuing. We decided to ask babysitters, Sunday school teachers, friends, and relatives if they had noticed a difference in Taylor's personality. We asked if they thought he was fussy and cranky because he couldn't hear and was having a hard time understanding what was going on. They all agreed that he had become withdrawn, "spaced out", and difficult to manage. And then one of them said, "Well, I have noticed he doesn't talk much anymore and he seems upset much of the time. He used to be so happy."
We decided to test his hearing ourselves. We set up a variety of opportunities for Taylor to interact with his family and environment. For one of our tests, we quietly came into the room with a pot and spoon and began to loudly bang it, repeatedly, in close proximity to his head. He was sitting in the middle of the living room floor manipulating his toy cars (lining them up) and HE DIDN'T EVEN FLINCH. He was absolutely lost in his own world. We stood there watching him for a few seconds, waiting to see if he would acknowledge our presence. He did not. I can't begin to tell you how scared we both were. The remaining tests we devised proved to be just as disappointing. I immediately made an appointment for Taylor to see our family physician.
Because we had insisted on the first available appointment, we saw a new physician in the practice. He was a very good listener and legitimized our concerns. He called an ear, nose and throat clinic while I waited and scheduled an appointment with an audiologist for the following morning. He agreed that we needed to investigate a possible hearing loss.
Surprisingly, Taylor cooperated nicely for the audiologists. They placed him in a high chair in the middle of the testing booth. He turned on cue every time he heard a sound. He "passed" all their tests. I was confused. I discussed, in detail, my concerns about his hearing. I was told he had scored within normal limits on all their tests and they hadn't found anything out of the ordinary. They recommended I wait a month and discuss my concerns with our parent educator through the Parents as Teachers program.(I had filled out an extensive patient history.) (Continue with Part II.)
Buy The newest version (2002) of this book online!
Biological Treatments for Autism and PDD Online > Chapter 11: Part I | Part II | Part III