Helping a Child with Tourette Syndrome

By Pamela S. Lewis
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When my son, David, first began to crawl, he made strange movements and seemed uncoordinated. His pediatrician and naturopath told me not to worry; every child has his own style, they said. When David was two, he began making odd stretching facial expressions, especially when eating. I thought to myself, "Tourette?" I'd been an RN for 20-some years and had never identified a case of Tourette syndrome. I immediately went into denial and did not give Tourette another thought for years.

David developed other symptoms, such as pushing his fingers down his throat and making himself gag. These symptoms would come intermittently for about a year and then change into some other odd behavior. At three, he suddenly began stuttering. This came overnight following a stressful family trip, and I wondered about the connection. I felt greatly alarmed, but treated it in a very matter-of-fact manner, assuring him it would pass. Within a few days the stuttering no longer debilitated his speech, but it reoccurred intermittently in a milder version for some years. I felt crushed to see my bright and verbal son struggle to communicate through his stutters and what I now know as phonic tics.

David has always expressed as a very happy person, but when he was about four, he became clinically depressed. Because I had a history of severe depression associated with wheat consumption, I immediately removed wheat from his diet, and his mood changed back to his happy norm within 48 hours. David also had a small peculiar cough, or sometimes snuffles, which would come for long periods of time and then go away, and many other symptoms, such as mouth biting. I suspected food allergies and eliminated several foods from his diet. He did do better without wheat, dairy, corn, soy, citrus, nuts, and sugar.

When David reached seven, I was weary of acting as his "food police" and decided to give him free rein to see how he would manage his own diet. He ate free-range eggs every day and used large amounts of honey for breakfast. Only a week went by before he began throwing his head in a classic Tourette pattern. I could no longer deny the diagnosis.

I talked with my husband about tics, and he confessed that he himself had thrown his head in a like manner as an adolescent. He had also had arm, hand, and facial tics. He had suppressed the memory, and no wonder; when he exhibited symptoms, he was admonished to control himself and banished when he could not-the typical "treatment" of the time. He was not taken to a doctor, so there was no diagnosis. Eventually my husband learned to control the symptoms. When we talked with his mother, she recalled experiencing uncontrollable eye-squinting as a teenager, which had been passed off as "nerves."

Meanwhile, David could not walk or see straight due to severe upper body tics. I could hear the little bones in his neck crack when he threw his head. The movement clearly hurt and exhausted him, and vocal tics emerged in force. A playmate scolded him for his tics, and David experienced a despair and humiliation he could not even verbally process because the tics would not let him.

Once I identified the syndrome, I had a focus to work with. I went to our small city library and checked out the only book they had on Tourette. I read words like "incurable" and "lifelong"; I read that the cause was unknown, but that a genetic influence existed. I learned that the disease worsened through adolescence (a particularly difficult time of life anyway) and that the best modern medicine had to offer came in the form of Haldol and Clonidine to suppress the symptoms. As a psychiatric nurse, I had seen the irreversible damage of Haldol in the form of Tardive dyskinesia. I was aghast at the prospect of giving my child major tranquilizers. I descended into a period of grieving, accompanied by frantic activity.

I created an elaborate rotational diet based on specific foods for my son's blood type. (I now believe that rotating foods is more effective than using specific foods for blood type.) Eventually, through a long process of elimination, I discovered David's main food sensitivities; other sensitivities have come and gone, sometimes to reemerge. We have come to recognize them as they present due in part to an increase in tics from those foods, and also from his craving whatever food causes problems.

Peanuts take a very long time to digest, as long as 12 hours, and frequently carry a toxin called aflatoxin, which can cause rage episodes or depression. David used to inhale the smell of peanut butter and feel his tics worsen. Eggs presented another problem, and so did most nuts and seeds. Intense sweet foods without a proper protein back-up caused tics. (Nurses in newborn nurseries know about the sensitivity of a baby's blood sugar. If it falls too low, the infant can have a seizure. The nervous system has great sensitivity to blood sugar changes.) Wheat, dairy, corn and soy all caused tics if eaten too frequently. Food preservatives and red dye in any amounts caused increased tics. Any food eaten too frequently became a problem.