Chapter 14
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, and 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 againHe 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.)

I boldly refused this advice and insisted on a visit with the ear, nose and throat (ENT) specialist (otolaryngologist).  I needed a physician’s opinion on Taylor’s hearing.  While I was scheduling this appointment, I learned that the clinic had a speech pathologist on staff and requested an appointment with her as well.  If Taylor wasn’t communicating anymore, maybe she could help us figure out why.  Fortunately, the ENT doctor and speech pathologist agreed to work us into their schedule that afternoon.

That afternoon my husband and I took Taylor to the clinic for his preliminary evaluation with the Speech Pathologist.  As she observed Taylor and began to ask us questions, we had the realization that something very serious was going on.  After she had gone over all the forms and questionnaire we had filled out, we were asked to wait in the reception area so she could consult with the ENT doctor. 

The ENT doctor was a compassionate man who listened intently to our concerns and fears.   He observed Taylor manipulating toys and tried to interact with him repeatedly. He looked at us with genuine anguish as he shared the speech pathologist’s findings and his own conclusion.  Their findings indicated that something other than his hearing lay at the root of our concerns. They were both sensitive to our feelings and very understanding.  (We weren’t accustomed to this.)   He suggested that Taylor see a pediatric neurologist immediately.  There was only one specialist of this nature in our area and because he was new, his schedule was full.  Though the ENT had tried to get us in the following day, we had to wait a week for the appointment.  Needless to say, it was an unpleasant week for our family.

Suspecting your child’s development is out of the ordinary and having those concerns validated by a specialist is terribly frightening.  We had wholeheartedly anticipated that the ENT would find the cause of Taylor’s mysterious behavior to be linked to a hearing loss.         

Since you don’t see neurologists for anything remotely routine, we were very nervous about the appointment.  Because we were so afraid and didn’t have a clue what to expect, we filled our time by examining Taylor’s development.   We began by polling all the people involved in his life.  We talked about their answers and shared our own observations.  Then we compiled a list of all the changes that had occurred in Taylor’s personality and development over the past few months.  The list was quite extensive.

  1. Lack of language or any verbalization
  2. Loss of previously used words and phrases
  3. Severe sleep disturbances
  4. Constantly tired, cranky, and unhappy
  5. Spaced out
  6. Dark circles under his eyes
  7. Spinning himself for an unusual amount of time per day
  8. Chronic infections
  9. Possible hearing loss
  10. Unusual play with toys
  11. Resistance to  human interaction
  12. Developing a weird gait while walking
  13. Toe walking
  14. Teeth grinding
  15. Odd change in hair color and texture
  16. Unaware of his environment and the people in it
  17. Purposefully putting himself in tight places
    (i.e. between the wall and refrigerator, and under couch cushions)
  18. Excessive thirst at night
  19. Lining up his toys
  20. Avoidance of eye contact
  21. Putting his body at odd angles to look at things
  22. Prolonged temper tantrums
  23. Clumsiness (previously he had been very well coordinated)
  24. Musty odor to urine
  25. High tolerance for pain

Shocked by the number of items our list contained, we realized how serious Taylor’s situation was.  We had never sat down and analyzed his development before.  It was clear he was regressing.  Feeling intimidated, we asked Bill’s mother to go with us to the neurologist for moral support.  In the meantime, we began searching medical books and looking on the Internet for possible solutions to the symptoms Taylor was experiencing. Autism was the word that kept cropping up. 

Our encounter with this particular neurologist was the best and worst thing that could have happened to our family.  Despite his poor bedside manner, the visit started off typically enough with him looking over Taylor’s file.  He read our family doctor’s report, the ENT doctor’s report, and the speech pathologist’s report.  He asked a few questions (some of them we found quite odd) and made an inflammatory remark about the speech evaluation.  We were then moved to an examination room where he tested Taylor’s reflexes, tracked his eye movement, and watched him walk.

I cautiously brought up the subject of autism and asked if he felt this could be at the root of Taylor’s regression. I was told (in a very condescending manner) that children who have autism were very different from our son and that autism was evident from birth.  Because of our recent research into Taylor’s regression, I knew this was not totally accurate, but I wasn’t sure how to respond. 

In a manner you would use to tell someone their child has a cold, he informed us of our son’s suspected misfortune.  “It doesn’t look good for Taylor,” was his first statement.  The three of us were dumbfounded.  “What do you mean, it doesn’t look good?”  I asked. 

He proceeded to tell us that Taylor had a neurodegenerative brain disease, that we would have to do extensive testing to determine which disease it was, and that these diseases were incurable. 

I pressed on, “What do you mean incurable?  Will he die from this disease?”

 His response was even more shocking “Yes.  It could take 18 months or 18 years depending on which disease it is.  But you better hope for 18 months, because the pain and suffering are unbearable.”

I was numb.   I could clearly see that my husband and mother-in-law were as astonished at this remark as I was. 

We assumed he found something conclusive in his examination of Taylor that would give him the confidence to make a statement like this.  “What causes this disease?” was our next question.  Another offensive response: “It’s genetic.  Let’s just say that it is unfortunate that you and your husband met and had children.”  Terrified, I asked the next question.  “If it’s genetic will it affect our other son?”  His answer: “Once we determine which disease Taylor has we will have to test Alan.  Chances are he will acquire this disease as well.”

Feeling the crushing weight of the world, we sat in silence, in disbelief.   He told us we would need to have blood tests done immediately to determine which neurodegenerative disease we were dealing with. It would take six to eight agonizing weeks before we could expect to have the test results back. Since these were rare diseases, not all labs were equipped to administer the tests. The blood would have been sent to laboratories in several states.   Physician’s orders in hand, we made our way to the hospital laboratory.

The two months of waiting were a nightmare. I remember thinking how nice a diagnosis of hearing impaired or autism would sound in comparison to being told you were going to lose one and quite possibly both of your children to a hideous disease.  We stumbled through the days and cried through the nights as our lives came crashing down around us.  We poured every ounce of energy into interacting with Taylor.  We refused to watch him leave us without a fight.

Remembering the speech pathologist who had been so compassionate and understanding, we decided to give her a call, to take a chance.  We knew full well that if Taylor had one of these neurodegenerative diseases, a speech therapist would be of no help.   We asked her to start coming to our home twice a week.  My husband and I wanted to know how to communicate with the son we were losing. With reservation, she accepted the challenge. It was one of the best decisions we ever made.

The day for answers finally arrived. We had prepared ourselves as much as we could for the news. When we entered the neurologist’s office, it was evident that his tone and demeanor were somewhat different from our initial visit. He wasn’t quite so abrasive and egotistical. Almost begrudgingly, he informed us that all of our son’s tests were normal. (The urine organic acid test done initially was done at a laboratory that did not check for byproducts of microorganisms). He couldn’t answer any of our questions except to say that if he were in medical school and Taylor’s history was presented as a case study on an exam, he would have failed the exam had he not proceeded in EXACTLY the same manner in which he had.

The neurologist wanted us to see a child psychiatrist. He said he had spoken with her about Taylor and that she would be the appropriate professional to help us. When I called to make an appointment, I was told what the visit would entail, how long to expect to be there, and the cost. When I asked about the specific developmental tests mentioned, I was told that these were the standard tests administered when diagnosing autism or pervasive developmental disorder. I WAS FURIOUS! I thanked the receptionist for her time and promptly canceled the appointment.

I have since learned that the child psychiatrist is a competent, well-respected professional. But I wasn’t about to see a professional recommended by the neurologist who so condescendingly informed my family that Taylor’s regression had NOTHING to do with autism.


 Diagnosis of Autism

Knowing that because of this misdiagnosis we would always and forever get a second medical opinion on anything remotely serious, we scheduled appointments for Taylor to be evaluated by our local regional center (the state agency responsible for diagnosing and providing services to individuals with developmental disabilities) and a team of neurologists at a University Autism Clinic.  We went through all the testing and questions and watched with agony as Taylor failed to comply with their requests. They were all in agreement: late-onset infantile autism.  It became Taylor’s official diagnosis.


 Intervention

The diagnosis of autism was easy to take after believing your son was going to suffer a slow, agonizing, painful death. So, while Bill focused on meeting our growing financial demands due to the necessary therapies (by working three jobs), I focused on educating myself about autism.

Taylor had been participating in speech therapy for over a month when he was officially diagnosed.  Immediately after receiving a confirmed diagnosis, we added small group speech therapy (at a local university communications disorders lab), occupational therapy (with an emphasis on sensory integration), and in-home behavior management.  Initially, the only one-on-one therapy Taylor received outside the home was occupational therapy and we changed this to in-home as soon as possible.

Though Taylor seemed to be benefiting from these interventions, we knew he was going to need something more if we wanted to get our happy little boy back.  I was fortunate enough at this time to come across work by Dr. Bernard Rimland and Dr. Ivar Lovaas.  I soon realized that we should consider a nutritional approach as well as an intensive one-on-one program.

The occupational therapist that did Taylor’s initial evaluation was intrigued by my comments on a dietary approach.   She shared with me information about a family she worked with whose child was diagnosed with autism. Some of this particular child’s autistic behavior was directly related to the food allergies he struggled with.  While a diet did not cure this child, the results were remarkable.  The occupational therapist arranged for me to visit with this family who was willing to share their experiences with an elimination diet (which helps detect hidden food allergies) and other allergy interventions.  I was grateful.

As a direct result of my conversation with this wonderful family and my own experience with foods causing adverse reactions (Alan and the red fruit punch), I decided to start with a dietary/nutritional approach.  While I was reading one of Dr. Rimland’s papers regarding the removal of certain foods from the diet and the positive effects it had on some children with autism, I noticed a one-line statement about Candida-related autism.  My interest was piqued.  I knew first hand that a round of antibiotics could cause a vaginal yeast infection and I decided to look into the matter since Taylor had certainly had more than his fair share of antibiotics.

I first learned everything I could about yeast and its possible effects on the body.

It seemed logical that Taylor’s loose, mucous-containing stools were the direct result of a yeast overgrowth.  It also seemed logical that the redness around his anus and in his genital area, which we thought was a diaper rash, was actually a yeast rash that was causing an intense itching feeling.  It could also explain his urine’s musty odor.  I read that a yeast overgrowth could cause fatigue, which Taylor certainly suffered from.

In one of Dr. William Crook’s papers (author of The Yeast Connection, Tracking Down Hidden Food Allergies, and many other books and articles on allergies and yeast) he talked about ear infections, upper respiratory tract infections, antibiotics, and their relationship to allergies and childhood behavior.  I became confident there was a correlation between Taylor’s chronic infections, antibiotic use, and his subsequent regression.

 During my quest to learn about yeast, I came across a book entitled “Dr. McFarland’s Anti-Candida Diet”.   The book was actually a six-month program, divided into phases, to eradicate the overgrowth of yeast using a strict diet and a large number of nutritional supplements.  Though the program was designed for adults with yeast related illnesses, it made sense to me and I decided to modify the supplement portion of the plan to accommodate a 24-month-old child.

(I would like to note that Taylor began taking Super-Nuthera powder approximately one month before we implemented an anti-Candida diet. His eye contact certainly increased with the addition of this supplement and he didn’t have as many tantrums at transitions.)

As I began educating myself on diet and nutrition, it became very clear that Alan needed a diet overhaul as well.  He had experienced hives on several occasions (it wasn’t always clear what brought on this reaction) and he had also begun to have unexplained low-grade fevers, joint pain, muscle weakness in his legs, and migraine headaches.  His hyperactivity and inability to concentrate were at an all time high.  I didn’t think he would benefit from the same anti-Candida diet I had planned for Taylor, (I was mistaken) but I certainly felt that he would benefit from having all colors, dyes, preservatives, sugar, and processed foods removed.  I devised a separate diet and supplement program for him.

Initially, we were unable to find a physician who would listen to our concerns and help with the allergies we felt both of our sons were tormented by.  (In fact, it took us almost two years before we found such a physician).  Not only were physicians not helpful, but also we were told on more than one occasion that food or chemicals in the environment COULD NOT cause the type of reactions we were describing.  We were bold enough on one occasion to bring copies of our programs for Alan and Taylor for their approval.  What a mistake!  We were told to not waste our time, that these alternative therapies were a hoax.  Since these same physicians were unable to offer their own treatment plan (other than a pharmaceutical “fix” to help our children sleep), we decided to forge ahead with our plans and implement the necessary dietary and supplement changes. 

Feeling extremely apprehensive about undertaking such an enormous task without a formal education in nutrition, I decided to consult with a pediatric dietician.  The problem was, we couldn’t get an appointment until well after the holidays.  We decided to proceed on our own until our scheduled appointment.  So approximately one month before Christmas, our family started on a journey that would lead to incredible successes for both our children.

We had developed a great relationship with Taylor’s speech pathologist and she was very encouraging.  We shared with her all of the information we had gathered and she felt it was certainly worth pursuing.  Her encouragement meant everything.  We also had the support of a family friend who had been fighting yeast-related illnesses for several years.  She proved to be critical in helping us to modify recipes. 

It is extremely intimidating to step outside the box of standard medical practice and it is so very critical that families receive the necessary supports when doing so. If our own family had not received support from a few key individuals, it would not have been possible for us to manage this type of intervention.

The following diet and nutritional supplement programs we implemented for our children were vital to the successes they achieved.


 Anti-Candida Diet

  • Hormone-free, free-range meats (You will need to purchase free-range meat from a health food store or a natural food cooperative. Store-bought meat contains the hormones and antibiotics the animals have been administered.)
  • Fresh vegetables (organic if possible)
  • Organic brown rice
  • Filtered water
  • Spices (sea salt, pepper, and fresh garlic) 
  • Expeller pressed canola oil (Oils in the grocery store are derived through a process using petroleum-based chemicals.)
  • Now Brand Pure Vegetable Glycerin (I used this to “sweeten” Taylor’s rice and to add to his supplements so he would take them)
  • Hain Safflower Margarine (DO NOT purchase the “no salt” formula as it contains a preservative that may or may not be from a natural source.)
  • Brown Rice Flour Brown Rice Pasta (There are many brands available at health food stores that contain only filtered water, sea salt and brown rice.)

This restrictive diet seemed to us to be the most natural approach to killing the yeast we felt was interfering with Taylor’s development. Because Candida thrives in a sugary environment, we eliminated not only processed simple sugars, but all sugars (i.e. fruits and fruit juices, honey, maple syrup, brown rice syrup etc). In our efforts to limit carbohydrates (which the yeast can convert to food to survive on), we had unknowingly removed gluten from Taylor’s diet.  We removed milk and dairy products because we felt confident they had played a role in Taylor’s repeated infections.  The diet portion of this program was relatively easy to follow since all processed foods were eliminated.  Although it was not complicated, it took a little more time to plan ahead and prepare.  Getting him to eat the foods was another matter.


 Taylor’s Supplements

  • NON-DAIRY liquid calcium supplement Since Taylor is now able to take his supplements in capsule form; I prefer to use calcium citrate capsules. I prefer to use calcium citrate capsules.
  • Magnesium  I now use magnesium citrate or magnesium glycinate in a capsule form that can be pulled apart and added to a food if the child cannot tolerate swallowing pills. Both our children now take their magnesium in a citrate and glycinate form.       
  • Garlic Oil Extract (If your child can swallow pills, you may want to use the capsule form, but make sure it is the formula that does NOT contain whey, which is a form of dairy.) I would get Taylor to take this by putting it on his pasta for flavoring. This product is an antifungal agent.
  • MCT Oil (medium chain triglycerides) (This product is broken down in the intestine to form the antifungal agent caprylic acid; see chapter on yeast and antifungal treatments.)
    NOTE:  If your child can swallow pills, caprylic acid supplements are very effective in killing yeast.
    DO NOT attempt to pull caprylic acid capsules apart in order to add the powder to food, it is extremely bitter and causes a burning sensation on the mucous membranes in the mouth.
  • Acidophilus (DAIRY FREE acidophilus in a powder, they also make a capsule form, it is to be given 30 minutes prior to meals in a small amount of filtered water) DDS now makes a powdered formula that contains FOS, (fructooligosaccharides).  FOS is a natural carbohydrate that effectively promotes the growth of beneficial bacteria such as lactobacillus acidophilus and bifidobacteria in the lower intestine. (1)
  • NOTE: When taking any form of acidophilus or FOS (fructo-oligosaccharides) it is important to gradually work up to the recommended dosage.  Adding acidophilus too quickly can cause constipation OR diarrhea. FOS may initially cause gas and belching. (1)
  • Zinc (chelated zinc gluconate and zinc picolinate, 30mg) Taylor now takes zinc in the picolinate form only. If your child cannot swallow pills you can buy a capsule form, pull it apart and add it to food.  You may also choose to purchase zinc in a liquid form.
  • Super Nuthera Multivitamin with high dose B-6 (powdered form) Taylor still takes this supplement in the tablet form.
  • Choline/Inositol At the time Taylor was taking SuperNuThera in the powdered form and it did not contain choline and inositol.  I knew the tablet form did and decided to supplement these B vitamins.  Choline is needed for nerve transmission and inositol is vital for hair growth. (1)  Remember, Taylor’s hair had changed colors and texture.  It really didn’t feel like hair at all, it was dry and brittle and when he was having a particularly bad day in regards to his behavior, his hair would literally be standing straight up.  It was an unexplainable phenomenon.
  • (Multiple Mineral Supplement)
  • (Evening Primrose Oil) Primrose oil contains essential fatty acids (EFAs)which aid transmission of nerve impulses andare needed for normal brain function. EFAs are also beneficial in the treatment of candidiasis. (1)   
  • CoQ10 (Coenzyme Q10) Is a vitamin like substance that resembles vitamin E, but which maybe an even more powerful antioxidant.  It is also called ubiquinone. It plays a crucial role in the effectiveness of the immune system, it is beneficial in treating candidiasis, and it has the ability to counter histamine and therefore could be valuable to allergy and asthma sufferers.(1)

Getting Taylor to take all of his supplements was not an easy task.  We developed a schedule and he took his supplements before and after every meal and at bedtime.  It has been three years and nine months since we started using nutritional supplements and what he takes and the quantity has changed considerably.  He is now able to take all of his necessary supplements with his breakfast and evening meal. 

Alan’s diet was not nearly as restrictive as Taylor’s and was originally based on the Feingold Diet. The Feingold Diet addresses not only food allergies and sensitivities, but the relationship food additives play as well.  We eliminated ALL preservatives, colors, dyes, and processed foods from Alan’s diet.  In addition, we had to eliminate many typically healthy fruits and vegetables.  While this diet made a marked improvement in his behavior, we were still missing a critical piece of the puzzle. He took the following supplements while he was on this diet.

For more information about food-additive freediet contact:
The Feingold Association of the United States
554 East Main Street, Suite 301
Riverhead, New York 11901
Phone: 800 321-3287
www.feingold.org


 Alan’s Supplements

  • (Chewable Multiple Vitamin)
  • MultiMin (Multiple Mineral Supplement)
  • (Evening Primrose Oil)
  • Citronex (Grapefruit Seed Extract)
  • Pycnogenol (pinebark)
  • CoQ10 (Coenzyme Q10) Is a vitamin like substance that resembles vitamin E, but which maybe an even more powerful antioxidant.  It is also called ubiquinone. It plays a crucial role in the effectiveness of the immune system, it is beneficial in treating candidiasis, and it has the ability to counter histamine and therefore could be valuable to allergy and asthma sufferers. (l)
  • (Multiple strains of probiotics, i.e. acidophilus)
  • Zinc 30 mg(chelated zinc gluconate and zinc picolinate)

These diets will seem severe and too difficult for many families to adhere to. We decided on them for a variety of reasons.

In Taylor’s case we had heard about using Nystatin to kill yeast overgrowths. We had even talked to a couple of families who had children with autism who had been using Nystatin successfully for several months. The problem was, when the child went off the Nystatin, the autistic symptoms returned. We didn’t like the idea of a long-term use of any pharmaceutical agent and decided to try a “natural” approach with garlic oil, Lactobacillus acidophilus bacteria, and MCT oil first. Everything we read about yeast and Candida outside of “mainstream” medicine insisted on modifying the diet and using nutritional supplements.

In regards to Alan, we had learned that even fresh fruits and vegetables could cause adverse affects in individuals who are sensitive to salicylates. Salicylates occur naturally in many healthy foods and are found artificially in the colors, dyes, and preservatives used in so many of our processed foods. They can also be found in unsuspecting toiletries; mouthwash, toothpaste, etc. (2)

All things considered, we didn’t feel like we had a lot of options. We were losing our youngest son to autism and our oldest son was beginning to experience unexplained physical illnesses. In the process of losing Taylor, Alan had begun to have migraine headaches. At first we thought it was due to the stress our family had been through as a direct result of Taylor’s misdiagnosis. Then Alan began to experience low-grade fevers. Sometimes the fever was accompanied by muscle weakness in his legs and joint pain, other times not.  At about this same time he also started to have hives. The diets just seemed like the right thing to try.


 Implementing the Anti-Yeast Diet and Dealing with the Yeast Die-Off Reaction

Once we made the commitment, everything just seemed to fall into place.  Researching and planning these interventions for our family was simple compared to the actual implementation!  We had no idea how much skepticism and resistance we would encounter-- not from our children (although they weren’t too cooperative in the beginning),but from family and well-meaning friends.  We even had our own doubts and it was particularly difficult when Taylor experienced the die-off reaction (Herxheimer reaction) after only one day on the diet. We had read about this effect, but we were in no way, shape or form, ready to experience it.

We had decided beforehand that NO MATTER WHAT, we would NOT go off the diet for at least ten days.  By mid-afternoon the first day, I was ready to quit.  Taylor had been extremely agitated and upset at his entrees for breakfast and lunch and Alan wasn’t any too happy either.  While the speech therapist was trying to interact with a very tired Taylor, I went to check on Alan.  To my astonishment, he was sitting at his table coloring, inside the lines, something I had NEVER seen him be able to do.  He was always either too busy to sit still or he would scribble wildly all over the paper.  I decided to stick to my guns about the diet.

Taylor refused to eat ANYTHING the first day of the diet.  We had anticipated he might be stubborn about some of the dietary changes, but we certainly didn’t expect him to refuse everything.  We made sure he drank an ample amount of filtered water, but that didn’t alleviate our concerns about his well-being.  

He actually went to bed early the first night of the diet, which frightened us considerably.  For the past six months he had been fighting sleep horribly and at one point, he was sleeping one to three hours in a 24 hour period and not all at one time.  The dark circles he had developed around his eyes were even more pronounced after only one day on the diet and he looked terribly pale.  We were convinced we were somehow harming our little boy.
 
The following day didn’t prove to be any better.  Taylor was extremely lethargic and just lay on the couch for several hours, doing nothing.  He had a thick greenish-yellow discharge in the corners of his eyes this day, and for several days thereafter.  I prepared and offered him his “new” foods but he didn’t have the energy to move, let alone eat.  So another day went by and Taylor consumed NOTHING but filtered water.

By the end of the third day, I was in tears.  Taylor was still experiencing flu-like symptoms and I was convinced we were killing him.  When Bill came home (working three jobs, we barely got to see him anymore), he was able to coax Taylor into eating a few green beans and a couple of small pieces of meat.  Taylor had NEVER eaten meat that wasn’t processed (i.e. ham, meat sticks, lunch meat, and hot dogs) and I couldn’t believe Bill had been able to get him to swallow it.  Things were looking up. 

By the fourth day, he started eating some of his new foods.  He still wasn’t thrilled with his options, but each day got easier as he slowly began to accept his new diet.  The supplements were a little trickier.  He soon realized, however, that we were just as stubborn as he was on this issue and he gave up fighting.  (There were many days I spent the majority of my time getting him to swallow his supplements.)  About ten days into the diet, Taylor’s energy level returned.


 The Tide Begins to Turn

Everyone who was involved in Taylor’s therapy noticed a major difference IMMEDIATELY upon the implementation of the diet and antifungal supplements. We new we had made the right decision. While the diet and antifungal therapy certainly did not cure our son’s autism, it helped him in many significant ways. His eye contact was increasing and his tantrums were lessening in frequency and severity. He was certainly not as spaced out anymore, and he was able to pay attention and focus more on the people in his environment.

After only one month on the diet, his allergic symptoms were vanishing and he looked so much healthier. His dark eye circles were almost non-existent, he wasn’t wheezing anymore, and he didn’t have the chronic running nose. We decided it was time to forge ahead and add the next component: an intensive, one-on-one, 40-hour per week, home-based program.


 Home-Based Program

It took us two months to devise a plan that would meet Taylor’s needs and not totally disrupt our lives (our so we thought). We had already established a solid foundation of therapeutic intervention for Taylor. He was receiving speech therapy (both one-on-one and group), occupational therapy (with an emphasis on sensory integration), and Bill and I were working with a behavior management technician from a local agency in an effort to learn how to consistently and effectively handle Taylor’s tantrums and non-compliant behavior.

I had the privilege of talking to Dr. Bernard Rimland about the incredible improvement Taylor was making simply by manipulating his diet and adding nutritional supplements. He suggested I talk with a colleague of his who had a child with autism. Through my discussion with her, I learned about the book Let Me Hear Your Voice, by Catherine Maurice. It is an incredible book that I used as my guide in setting up Taylor’s program.  I had already read The Me Book, by Dr. Ivar Lovaas, and was aware of the studies that had been conducted using a discreet trial method of teaching (ABA-- applied behavioral analysis).  The results of the studies were impressive and we decided to implement this type of teaching technique into Taylor’s program.

Because of Taylor’s group therapy, I had the advantage of knowing a few professors and many graduate students at the university.  It was relatively easy to convince them to participate in our program. Many of them had personally witnessed Taylor’s improvement at the onset of the dietary intervention. The key component that was missing was someone who would commit to helping me write and implement a program specifically for Taylor.

We decided to ask the behavior management technician that we already had a relationship with. We fully expected to have to beg her; Alan and Taylor weren’t the easiest children to work with! She gladly accepted the invitation and would later prove to be the cornerstone of Taylor’s program. Without her loyalty, commitment and dedication, I am confident my children would NOT be where they are today.

The following program changed periodically over the 17 months of its existence. For the most part, we were able to keep the core group of therapists that initially began working with Taylor.  Of course, college students graduated and moved on and a few needed to quit because Taylor was so difficult to work with, at least in the beginning.


 Therapy Schedule

Occupational Therapy.................................................................................. 2-3 hours per week
Speech Therapy (one-on-one)....................................................................... 3-5 hours per week
Speech Therapy (group)............................................................................... 3 hours per week
Discreet Trial Training  (ABA)....................................................................... up to 10 hours per week
Community Integration ............................................................................... 10 hours per week
(We had serious problems with Taylor’s behavior in public places)
Graduate Students ......................................................................................  up to 12 hours per week
(To insure Taylor was constructively involved in an appropriate activity at all times)

Even though Taylor’s behavior had greatly improved simply by modifying his diet, it was clear that he still needed to “catch up” in his development.  He wasn’t attempting to initiate communication and was content to be left alone for as long as we would allow (usually to line up his toy cars or blocks).   At times he would still become extremely agitated if we tried to interact with him. 

His resistance strengthened with the utilization of discreet trial training. He put up such a fight during these therapy sessions that we were questioning our decision to use this method of teaching. It took well over a month for him to settle down and start to make progress.  At the time, his progress seemed painstakingly slow, but in reality it was quite fast.  This portion of his program, which was initially very uncomfortable to witness, was an integral part of his success. 

Six months into the anti-Candida diet and three into the home-based program, Taylor was doing so well that we began to add foods back into his diet.  We chose not to give him dairy products (we suspected they were at the root of his repeated infections) and substituted soymilk and soy cheese.  We didn’t see any major changes.  We then gradually added grains (i.e. wheat, cereal, pasta, etc.).  Once again we didn’t see any major changes. (I want to note that Taylor had not been ill since the first few days of the anti-Candida diet!)

With the exception of Alan drinking cow’s milk, both boys were now on the same diet.  Difficult as it was, we were very motivated to follow this diet to the letter, knowing how much it had improved our children’s lives.  Taylor was beginning to speak, his breakdowns at transitions were continuing to lessen, and his tantrums were becoming almost nonexistent.  Alan was much more in control of himself.  After being on the diet for a little less than two years, we were able to gradually discontinue Taylor’s home program.  He still received speech and occupational therapy but the emphasis was shifted to interacting with children his own age.  He was still having difficulty with this. 

Even though both boys had made remarkable improvements, they were far from having typical development. They both still had trouble focusing and paying attention to task. They could be extremely impulsive and emotional and at times they were very compulsive and obsessive. 

And so we continued to plod along, pleased that the boys were doing better, but still feeling like there was something we were missing. It was about this time I read Lisa Lewis’s article on Understanding and Implementing Gluten and Casein Free Diet. 

I realized while reading Dr. Lewis’s article that we had made a grave error when we added the soy products (they contained casein) and grains (they contained gluten) back into Taylor’s diet.  I also realized that this could be the missing ingredient in Alan’s intervention as well.  Determined to find answers, I called our family physician and asked him to order the blood and urine tests. (I had to argue with him over which laboratory we needed to send the specimens to.)  A few weeks later we had our results.

The results were conclusive; not one, but both children had extremely elevated IgG antibodies to gluten, gliadin, and casein, and also to ovalbumin (egg).  We swiftly removed all offending foods and basically went back to the anti-Candida diet with a few fruits added. 

We expected to see the boys immediately improve with this removal of troublesome foods and were very disappointed when they didn’t.  They both developed skin rashes and Taylor even started getting hives that ranged from the size of peas to quarters on his scalp and forehead. (Note by Dr. Shaw: These rashes are extremely common when withdrawing from gluten- and casein-containing foods according to Dr. Karl Reichelt in Norway.) Their bowel movements changed to very loose stools and they complained of stomach aches.  These symptoms persisted for 6 weeks and were very intense.  Agitated would best describe their disposition and aggressive their behavior during this period.

Since we knew without a doubt that the proteins in grains and dairy products were problematic for our children, we decided to stick it out.  (I am not sure we would have had the fortitude to continue, if we hadn’t had the test results to remind us why we were doing it.)  It was one of the more difficult times we experienced.  We had been accustomed to continual progress (even though it wasn’t fast enough for us) and this seemed like such a setback.   Taylor, who had never been hyperactive, was becoming so and Alan was out of control.  We had read in Dr. Lewis’s article that it could take as long as a year to see any positive results after removing gluten and casein from the diet and we hoped we wouldn’t have to wait that long.  While there wasn’t ever a regression in any skills they had mastered, both boys got much worse behaviorally for several months.  They became extremely agitated and cranky.  We encountered quite a lot of skepticism from some family members about the effectiveness of this “crazy” diet. 

While I was out in the community, I ran across another mother with a child who had autism.  She knew about my children and I began sharing with her our latest experiences with gluten and casein removal.  She told me about Dr. William Shaw, a researcher in Kansas City, who was doing urine organic acid testing to determine the levels of abnormal fungal metabolites in children with autism and attention deficit disorders. She had ordered the test for her daughter.  Although her daughter had taken antibiotics on only one occasion, she had elevated levels of fungal metabolites.  I knew we had to order the test for our boys.  I began to wonder if Taylor might still have a yeast problem, even though he had made such incredible progress, and I wanted to assure myself that yeast wasn’t the culprit in any of Alan’s difficulties.

We were excited to learn that we didn’t need to make a doctor’s appointment to order the test, (our doctor just needed to sign the release) and that the urine organic acid kit would come directly to our home.  We sent for the kits, administered the tests, and waited anxiously for the results.  We were very surprised to learn that the children’s test results were so similar! 

Taylor’s urine organic acid results performed in Dr. Shaw’s lab showed increased tartaric, possibly of a fungal origin and both Taylor and Alan had increased dihydroxyphenylpropionic-like compound of possible anaerobic bacterial origin in their urine.  I didn’t know what to make of the test and called Dr. Shaw to discuss the results.  He was very helpful and after going over the boy’s tests with him, I decided to make changes in their supplement program.  The most significant finding this test revealed was that both children had high levels of byproducts probably derived from the Clostridia family of bacteria.  (I can only imagine what Taylor’s test results would have been prior to the anti-Candida diet.)  

The following day we began increasing the number of probiotics (i.e. Lactobacillus acidophilus) the boys were taking.  Gradually we worked up to 15-20 billion organisms a day, or 15 to 20 capsules, depending on which brand we were using.   We were trying to replace the anaerobic bacteria, probably from Clostridia bacteria, with “good” bacteria.  We continued using this high dosage for six months and then slowly backed down to 5 billion per day, which is the dosage both boys are currently taking. 

Even with all the progress the children were making, we began to wonder how long we could continue to live on such a restricted diet.  If you indeed call it living!  We heard about an immunotherapy with enzyme-potentiated desensitization (EPD, see chapter on the immune system) and decided to pursue it.  We found an environmental allergist in the Kansas City area who used this form of allergy treatment in his practice and we made an appointment.


 Behavioral Effects of Food Allergies and EPD Therapy

After three days of testing to determine if the children qualified for the EPD allergy treatment, I was ready for the “nut” house.  What we found was that both boys were not only allergic to ALL the foods we tested, but also to animals, molds, pollens and chemicals.  Their reactions to the testing ranged from “passing” out, uncontrollable screaming and crying, hitting, spitting, licking other patients, and running wildly around the office, to falling asleep.  If I had not been there, I never would have believed that corn, chocolate, apples, peanuts, wheat, molds, etc., could cause this type of reaction.  In fact, I lived it and STILL find it hard to believe!

We decided to have a few more tests run to identify digestive abnormalities, possible PST enzyme dysfunction (see chapter by Lisa Lewis, Understanding and implementing a gluten and casein free diet) and vitamin and mineral deficiencies. What we learned was beneficial and it helped to explain why the diet and supplements were helping our children. Although we felt EPD might be advantageous for our children, we didn’t look forward to any more restrictions being placed on the way we lived our lives.

After many discussions, we finally made up our minds to start EPD the following month.  Preparing for the shot every eight weeks was (and is) a lot of work and the three-day diet you must adhere to is anything but tasty. We adjusted the children’s supplements, because it is critical to follow the EPD supplement schedule in order to maximize the benefits of the shot.  After six months of the EPD allergy treatments and nine months after the removal of gluten and casein from the diet, both boys started making incredible progress. 

Alan began excelling in school. The learning difficulties he experienced (mainly, dyslexic tendencies and inability to retain information) had more to do with his allergies.  Alan was finally able to pay attention and do age-appropriate work.  His hyperactivity, unexplained fevers, migraine headaches, hives, joint pain, and muscle weakness have been almost totally alleviated.  He has been on EPD for 17 months now and has received 8 injections.  He has had only two unexplained headaches and one instance of muscle weakness since starting EPD.  Prior to EPD, he would miss three to five days of school a month because of these complaints.


 Recovery From Autism

Taylor stopped all formal therapies and was able to attend a typical preschool program, with minimal difficulties, 33 months after starting on the dietary and nutritional intervention program. They were NOT told of his “PREVIOUS” diagnosis of autism. He passed his kindergarten screening this past spring with flying colors and is excited about school.  Dietary infractions can still cause him to have adverse reactions, but they are minimal and short-lived.  He has friends he has made ON HIS OWN and they regularly call him and invite him to play.   Taylor has also been on EPD for 17 months and has received 8 injections.

We are still gluten and casein free and we plan to continue the EPD treatment as long as necessary.  (Fourteen months into EPD, we decided to give the boys a shot of B-12 with their EPD shot to see if it would enhance its effects. It certainly seems to be making a difference.) Currently, we can stretch the time between the children’s shots to almost ten weeks without too many symptoms occurring.  These symptoms can range from irritability to the inability to control emotions.  It is our hope that through EPD, we may some day be able to add gluten and casein back into their diet, at least in limited amounts.  But if not, their allergies caused by other foods and environmental factors should be eliminated.  Only time will tell.  While our diet is certainly different from most and children shouldn’t have to swallow umpteen supplements a day, it is worth the sacrifice.  It is the reason our children have “recovered”. 


 The Rest of Our Story

It has been a little over seven years now since my husband and I became parents. Most of those years we have spent trying to figure out a way to enable our children to lead healthy, productive lives. Many times, the very people who were supposed to provide us with support were the ones who put the biggest obstacles in our path. We learned to count on each other.

Researching and implementing the interventions we chose for our children took so much of our time and energy (not to mention money), that as I read our contribution to this book I am amazed we made it.

Alan and Taylor were certainly worth all our efforts. They started school a few days ago and as I watched them get on the school bus one morning and wave good-bye, I realized how fortunate our family was.
We were able to plan the strategies and interventions we chose for our children because we happened to come across the right information at the right time. It shouldn’t be like this. All families should have access to the same information as we did, so that they may have the opportunity to choose interventions that could drastically affect the quality of their children’s lives.  All children with autism and related disorders deserve the chance to RECOVER. I hope that my contribution in this book will make the way easier for other families.

Chances are if you try any of these interventions, things may get worse before they get better.  Don’t give up.  I remember wanting to quit hundreds of times.  But every time I hear Taylor playing with a friend, or watch Alan draw one of his intricate pictures, I thank God I didn’t.

(A videotape Managed Recovery from Autism is available from The Great Plains Laboratory. The tape documents Taylor’s recovery from autism and includes footage before and after recovery.)


References

  1. Balch J. and Balch P. Nutritional Healing. Avery Publishing Group, Garden City Park, NY. Pgs.7-8,10,37,39, 1990.
  2. Feingold B. Pure Facts. Feingold Associations of the United States, Alexandria, VA.Pgs.1-2, 1976.