Why the Tourette Association of America Should Be Investigated: Part 2

Looking back: Lack of progress treating Tourette syndrome for 40+ years 

Sheila Rogers DeMare, Director Association for Comprehensive NeuroTherapy

Sheila Rogers DeMare, Director ACN

After Part 1 in this series was posted on our website, we heard from a number of people who wondered why we are taking aim at the  national Tourette Syndrome Association/Tourette Association of America (TSA/TAA) when the organization does good work.

The reason we’re doing this? Because no matter how much hand-holding, support, and education takes place, until Tourette syndrome symptoms can be safely and effectively treated, suffering continues. 

No stone should be left unturned in the search for the answers to this disorder, wherever that search may lead. To date, major clues in this search have been ignored by the TSA/TAA, and their literature about alternatives to drugs suggests they give more attention to warning people about trying nondrug options than they do to to exploring them. We have copies of what the TSA/TAA has said in this connection in past newsletters and on their current website as evidence of this, and that’s only part of the story. 

See our first article in this series here. To date, our organization’s main focus for Tourette syndrome has been on concepts such as diet, nutrition, the gut-brain connection, the immune system and allergy, underlying infections, and the role of environmental toxins. These are not far out, woo-woo topics. They are areas that receive considerable attention for many other medical conditions. At the same time, ACN has always welcomed reports on anything that helps. 

Just as there can be many causes for headaches, there can be many causes for tics. We use the term Comprehensive in our group’s name because a number of approaches may be helpful to a given person.

It is no secret that conventional drug therapy for Tourette’s is far from satisfactory in both effectiveness and safety. If there were miracle drugs that stopped tics and related symptoms, while also being safe for children and adults, we would be the first to stand and applaud. But since there are not, and when potential avenues for better approaches are ignored, blocked, and kept from the public, an investigation is warranted.

Here’s an excerpt from a 1984 flyer by TSA, “Commentary on Alternative Therapies for Tourette Syndrome.” It is no longer available. 

“The TSA since its inception has received letters from patients, families, doctors and other researchers regarding the successful control of Tourette syndrome symptoms through the use of treatments other than the medications referred to [haloperidol, clonidine, tranquilizers, antidepressants, antiepileptics and hypertensives].”

Well, the “inception” of TSA was 1972. Close to 50 years ago, people were alerting the national organization to the successful use of integrative therapies, without drugs. Yet medications with frightening side-effects are still routinely prescribed to children with Tourette syndrome and few other avenues have been explored. Further, invasive use of electrodes implanted in the brain are considered for so-called intractable cases.

The flyer was written by Ruth Bruun, MD, who was chairman of the TSA medical committee at the time. It is even-handed, addressing difficulties in assessing natural therapies, admitting problems with the standard medications, and sharing the types of successful non-drug approaches reported. Some direct quotes from families and doctors are included in the document.

Unfortunately, this straight-forward approach to the issue did not continue as future decades came and went. To our knowledge. Some excerpts are shared in the next article in this series.

A child with who was six years old when the TSA began is now 55 (2019). No matter how the TSA may try to appear more open-minded, they will not be able to erase the failure to act over all this time.

And let me point out that is it not sufficient to have comments about alternative approaches buried in the TSA’s literature, or in newsletter archives that most physicians and families will never see. What matters is the main message that is received by busy practitioners, desperate parents, the media and the public. To repeat from our opening article, the conventional message is: “Tourette syndrome is a baffling genetic disorder for which there is no cure.”

Our upcoming articles will expose the TSA’s bias against natural and integrative therapies.

• We’ll outline how the TSA medical and scientific advisory boards have blatantly dismissed opportunities to move the treatment of TS forward;
• You’ll read how a determined mother started a grassroots Alternative Therapy Network for Tourette syndrome and why she handed the baton to me in disgust;
• We’ll fill you in on a 1991 survey by the TSA that sought feedback on natural treatments and how the results were shelved;
• I’ll share what it was like for me to serve as liaison to the TSA on alternative therapies. In a word: shocking. (Make that two words: shocking and frustrating);
• We’ll explain how the TSA blocked the inclusion of our efforts in television documentaries on Tourettes;
• And you’ll hear why some doctors wonder how the TSA board members “can sleep at night.”