Helping a Child with Tourette Syndrome
By Pamela S. Lewis
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.
I learned that it takes the body 72 hours to clear 90 percent of any food to the point where it will not cause a reaction when eaten again. I found this to be true for many foods, but not all. My son could eat eggs and chocolate about once every three or four weeks without any problem. Red dye, food preservatives, and peanuts could cause severe symptoms in any dose. Rancid or hydrogenated oils caused the most severe symptoms, which sometimes came on two days after the offending food was eaten and lasted for two to six weeks. Wheat, dairy, corn, and soy seemed better given at least 96 hours apart at first. Many commercial foods, such as ice creams, literally poisoned David.
I began the process of elimination by writing down whatever David ate on a given day on a calendar taped to the refrigerator. I kept separate notes on symptoms. Often, as with peanuts, David wouldn't have an increase in symptoms until the next day, or even later. I could find out what caused a problem by looking back and seeing what he had eaten. I would test a food by giving him only foods I knew he did not react to for several days before and after I gave him the suspect food. I then observed the results. One pattern clearly emerged: The foods he most desired and most often ate were the ones that caused the biggest problems.
In Chinese medicine, the liver partly controls the phenomenon of tics. Peanuts, aflatoxin, various chemicals, eggs, and intense sugar changes all stress the liver's capacity to function. The hormone storms of adolescence also add to the work of the liver. I began to think that David's tics might result from toxicity and an assimilation defect. His nervous system simply did not get the nutrients it needed in spite of his excellent diet. I began a more vigorous supplementation with minerals, multivitamins, essential fatty acids, amino acids, and antioxidants. I also began using complex homeopathy along with classic constitutional homeopathy. David received a large dose of his constitutional remedy and lower doses of liquid homeopathic remedies several times a day, specially mixed to encourage digestive strength and cerebral balance and to drain the nervous system of toxins.
Along with diet, homeopathy, and supplements, we provided movement and kinesthetic education. In addition to neurodevelopmental exercises to help the nervous system mature, we used the Feldenkrais Method of Movement Education®. Because David was so young, the hands-on aspect of the Feldenkrais Method was especially valuable. The mouth-biting aspect of the syndrome was eliminated with just one Functional Integration lesson of the Feldenkrais Method. The Feldenkrais movements also alleviated eye-rolling and other facial grimaces.
Even though I felt certain of David's diagnosis, I finally took him to see a pediatric neurologist for a formal evaluation. With David's agreement, we took him off his diet for a week before the appointment. His tics and other symptoms emerged in force. His usual capacity for lengthy concentration and focus vanished within hours. I felt unprepared for the emotional impact of having a formal diagnosis of ADHD as well as Tourette syndrome. It took about three weeks of his usual rotating diet before David returned to his previous level of functioning.
Because of David's youth, there was much we could do to take advantage of his neuroplasticity, including working with his belief system. We never "sentenced" David to having his syndrome worsen through adolescence, and we enlisted the help of his neurologist to reinforce the idea that he will outgrow it.
David is now 12, and his tics have continued to come and go. He manages his own diet to a large extent and tolerates many foods he did not in the past. The tics emerge in a far milder manner now than before we began working with diet and natural remedies. They do not interfere with his life. Most people today do not realize David has Tourette syndrome. His many activities include martial arts, baseball, soccer, campfire club, and music lessons. He excels at reading and loves humor in any form. Although the syndrome is supposed to worsen through adolescence, he already has broken that pattern.
I believe we will see an increase in Tourette syndrome, along with many other diseases, because of our increasingly toxic world. We could view tics as informational messages about function. Do we choose to see those messages as something to suppress or to listen to? Does it work better to focus the attention on the symptom or expand the view to the whole being and web of life? Do people with syndromes such as Tourette and Chronic Fatigue have the role of canaries in the coal mine? How can we look so far and wide for exotic cures and overlook the food we eat several times each day or the air we breathe? Food can act as medicine, but most people would rather change their religion than their diet.
I believe in the intelligence of Nature, the intelligence inherent in our bodies. Bodily mechanisms have purpose. Symptoms are not capricious but a message regarding function. I view the complex phenomenon of Tourette syndrome as grounded in toxicity, subtle structural imbalances, and inefficient nutrient assimilation. The elements that predispose a person to these defects seem genetic; but then lifestyles, eating habits, and movement patterns fall into this same category, and can change with the correct influences.
FOR MORE INFORMATION
Books and Articles
Anderson , Roy . First Steps to a Physical Basis of Concentration WBC Book Manufacturers, 1999; see www.crownhouse.co.uk.
Leckman, James F., and Donald J. Cohen. Tourette's Syndrome, Tics, Obsessions, Compulsions: Developmental Psychopathology and Clinical Care. John Wiley & Sons, 1999.
"CNS Spectrums." International Journal of Neuropsychiatric Medicine 4, nos. 2 and 3 (February and March 1999).
Feldenkrais, Moshe. Awareness through Movement. Harper and Row, 1972
Goddard, Sally. A Teacher's Window into the Child's Mind and Papers from the Institute for Neuro-Physiological Psychology. Fern Ridge Press, 1996.
Gold, Svea. If Children Just Came with Instruction Sheets! Fern Ridge Press, 1997.
"Links between Autism, Tourette, and Vaccinations." Autism Research Review International Quarterly Newsletter 13, no. 3 (1999).
"THC Alleviates Tourette Symptoms." Science News 155, no. 14: 215; www.sciserv.org.
The Feldenkrais Guild of North America , 1-800-775-2118; www.feldenkrais.com.
Tourette Syndrome Association Inc., 42-40 Bell Boulevard, Bayside, NY 11361-2820
Latitudes, PO Box 210848, Royal Palm Beach, FL 33421-0848; www.latitudes.org.
The HANDLE Institute, 1530 Eastlake Avenue E., Suite 100 , Seattle , WA 98102 ; www.handle.org.
Northwest Neurodevelopmental Training Center , P.O. Box 406 , 152 Arthur Street , Woodburn , OR 97071 ; 503-981-0635, fax 503-981-6435.
Northeast Center for Environmental Medicine, P.O. Box 2716 , Syracuse , NY 13220 , 315-488-2856.
Seroyal USA , 719 Creel Drive , Wood Dale, IL 60191, 630-227-9827, fax 630-227-9820, sells (to health care professionals only) natural supplements especially made for Tourette syndrome. Call for a practitioner near you, or introduce your practitioner to this company.
Pamela S. Lewis lives with her family near Eugene , Oregon . She works as an RN and has studied homeopathy, Chinese medicine, herbology, nutrition, and various types of bodywork. A Certified Feldenkrais Practitioner, she teaches both modalities of the Feldenkrais Method of Movement Education. Pamela can be reached at PamelaSL@aol.com