A Call to Leadership: Open Letter to the Tourette Syndrome Association

This letter from Sheila Rogers on behalf of the Association for Comprehensive NeuroTherapy was written in 1996 and is being reposted. The situation, unfortunately, has not improved.

The letter:

To date, the Tourette Syndrome Association (TSA) medical and scientific advisory boards have failed to respond responsibly to repeated reports of a relationship between environmental factors and TS symptoms. We hope that situation will change.

A brief history—

1983: A TSA flier on alternative therapies included reports of environmental stimuli negatively impacting TS symptoms. These triggers included foods, sugar, artificial flavors and colors, food additives, preservatives, molds, pollens, and chemicals. No follow-up or guidance was provided.

1983-5: Marshall Mandell, M.D., informed the TSA of his study on allergy in 25 cases of TS, with positive response to environmental medical therapy by many of the patients. Books on allergy reported work by environmental allergists Doris Rapp, M.D., and Dr. Theron Randolph, M.D., that supported a link between environmental factors and TS symptoms.

1987: Ginger Wakem started our network after her son’s case of TS responded to environmental medical therapy when drugs had failed. Five years later, frustrated by the lack of response from neurologists, she stopped her efforts; I took her place as director of the network.

1992-3: Medical board member Alan Naarden, M.D., conducted a national survey on alternative therapies for TS and presented the results orally at the national TSA convention. He acknowledged that environmental medicine, the Feingold diet, and nutritional therapy had been reported helpful. Results of the survey were never printed, however, so the information reached less than 100 people.

1993: Publication of Latitudes [print newsletter]  began. Every issue provided information on environmental factors as potential contributors to TS symptomatology.

1995: A report by Drs. Thomas Hyde and Daniel Weinberger in the Journal of the American Medical Association (February 8) suggested a relationship between genetics, “unidentified” environmental factors, and TS.

1996: I was informed in June that there was no one on the TSA medical board with an interest in this topic, and there were no plans for related studies. In November, I was told that board member Kenneth Rickler, M.D., has a sincere interest. We welcome this news.

Our recent survey substantiates prior reports and indicates that a high percentage of individuals with TS are impacted by environmental factors, with significant overlap of offending stimuli.

We are calling on the TSA to act promptly and:

• Review all existing data, including information received by the Association for Comprehensive NeuroTherapy.
• Warn all TSA professional and lay members about the potential for environmental stimuli to cause or aggravate TS symptoms.
• Encourage members to collect data related to environmental triggers.
• Develop a flier on avoidance, assessment, and treatment of environmental factors that would be provided to the media, put on the internet, and included in all introductory literature packets.
• Prepare an unbiased report on current nondrug approaches for TS.
• Stimulate interest in nondrug research within the scientific community, and pledge to fund related studies.

Sad fact: The child who was 7 years old when reports on environmental triggers for TS first surfaced is now 49 (age updated in 2014–and still no advice to the public and medical community on triggers for Tourette syndrome symptoms from the Tourette Syndrome Association).