Alan's diet was not nearly as restrictive ...

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 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.

Top

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.

Top

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.

Top

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.

Top

Therapy Schedule

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 soy milk 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 a 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 not only gluten, gliadin, and casein, but 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 food,s 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.

Top

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 anymore 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.

Top

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".

Top

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.

Top

References