Sheila Rogers DeMare, Director Association for Comprehensive NeuroTherapy
There’s a lack of research focusing on the types of non-drug treatments reported by families and some doctors as successful for Tourette’s. These reports have been shared with the TSA and ignored.
A 1982-84 flyer from the TSA on alternative therapies discussed reports from physicians and families on what people found helpful for Tourette syndrome (TS) without the use of drugs. It states there were “many” such reports. We focused on this flyer in Part Two of this series.
The alternative approaches used were summarized in the TSA flyer:
Dietary restrictions were varied to meet the needs of individual patients but usually consisted of the Feingold diet or a modification there of, eliminating additives, preservatives, artificial coloring and flavoring. . . . With very few exceptions, the reports of success fell into either of two categories: nutritional support or allergy control. Many patients seemed to do well on a combination of these approaches. A few families mentioned alterations in “lifestyle” which they had found to be helpful.
The flyer also clarifies the role of the TSA regarding these types of therapies:
In summary, the popular concern with nutrition as an influence on behavior reflects and has also stimulated a growing general concern among the scientific community. It will take time, however, for science to separate truth from rumor or exaggeration. The Medical Committee has available to it various reports sent in on “alternative therapies.” These will be kept on file and, when appropriate, may be shared with interested physicians, other qualified researchers, and interested families. . . The Medical Committee sees its role as encouraging parties in pursuing carefully designed clinical studies of new treatment approaches.
The failure of the TSA to act effectively
Well, it’s been 32 years since the above declaration of intent by the TSA was made. Since that time, MANY more reports on successful treatment of TS with integrative therapies have been received by them, a large number shared by our own organization. Yet to our knowledge, TSA has not funded studies on diet, allergy, or nutrition (beyond fish oil). Given this, one has to question either the sincerity of their intent or the Tourette Syndrome Association’s scope of influence. We suspect it is intent that is most lacking, but in either case, they receive a failing grade. An investigator could determine just how vigorous their efforts in “encouraging” this research have been.
A cardiologist shared observations on how diet, allergens, and chemicals affected his daughter’s Tourette syndrome symptoms
Of particular interest in the flyer was a short excerpt from a letter sent by a cardiologist to the TSA in the early 1980s. A more complete version provided to our organization is below.
TS was diagnosed in our 15-year-old daughter a couple of years ago. Onset of symptoms occurred at age 11 years. One can imagine our elation in learning there was a medication that would help, and then our disappointment at finding that even on just a minimal dose of the drug, she experienced every side effect in the book, even though her tics decreased by 85%.
We went to Marshall Mandell, MD. . . Although my daughter never displayed any typical allergy symptoms, it was found that she is allergic to many foods, some molds and pollens, and is highly sensitive to chemicals. She was placed on a rotation diet. She has been on the diet for four months and is being desensitized to molds and pollen. I have eliminated as many chemicals as possible from her food and environment.
Her reduction in tics while on the diet was 85%. I took her off the diet while she was on a trip with another family. Within two days, her tics significantly increased, and within one week, they dramatically increased. By dramatic, I mean nonstop tics with several vocalizations, as opposed to one simple tic every one to two minutes, and very slight, if any, vocalizations. Emotional and intellectual patterns that I had not necessarily associated with TS also reappeared at this time.
I observed her reaction to chemicals; with each exposure, her tics would double: An exposure to fluorides doubled her tics for two days; an exposure to a diesel motor running in front of our home increased her tics the entire period the motor ran; an exposure to paint doubled her tics for six hours; an exposure to paraffin in a small restaurant with many burning candles produced nonstop tics until we left the restaurant.
In my opinion, her sensitivity to chemicals produces a marked increase in the intensity and frequency of her symptoms.
Had this physician not been vigilant, the sporadic increases in his daughter’s tics—which were in fact aggravated by foods, allergens, and chemicals—would have been dismissed as classic examples of the “mysterious waxing and waning of symptoms” described in the medical literature on tic disorders.
Unfortunately, this doctor’s observations, among many similar ones, were not diligently considered by the TSA. Why?
Coming next in Part Four: The remarkable efforts by Dr. Marshall Mandell to uncover causes of TS symptoms.
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