Biological Treatments for Autism and PDD Online > Chapter 11: Part I | Part II | Part III
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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.
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 be 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 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
Twinlabs Calquick (NON-DAIRY liquid calcium supplement) Since Taylor is now able to take his supplements in capsule form, I prefer to use Nature's Way Calcium, it contains calcium citrate and malate, it is also dairy free.
NOW Magnesium (Magnesium oxide in a powdered form) 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.
Kyolic Pure 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.
Twinlabs MCT Oil (medium chain tryglycerides with orange flavor added) In retrospect, I wish I had used the plain formula, it is more versatile. (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.
DDS 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) If your child swallows pills, you may want to try Nature's Way Primadophilus Jr, Kyo-Dophilus, and Futurebiotics Acidophilus+. They are all dairy free products. You will need to add FOS individually as these brands do not contain it. Twinlabs NutraFlora FOS powder is an acceptable option.
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)
Twinlabs 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 (powdered form) Taylor still takes this supplement in the tablet form.
Twinlabs 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.
Nutricology MultiMin (multiple mineral supplement)
Natrol EPO (evening primrose oil) Primrose oil contains essential fatty acids (EFAs) which aid transmission of nerve impulses and are needed for normal brain function. EFAs are also beneficial in the treatment of candidiasis.(1)
Schiff 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.(Continue to Part III).
Buy The newest version (2002) of this book online!
Biological Treatments for Autism and PDD Online > Chapter 11: Part I | Part II | Part III