Why the Tourette Association of America Should Be Investigated: Part 4
Sheila Rogers DeMare, Director Association for Comprehensive NeuroTherapy
Dr. Marshall Mandell’s amazing discovery was ignored by the TAA/TSA
Throughout his allergy practice, Marshall Mandell, MD, worked with more than 70 Tourette syndrome patients. He learned that tics and related symptoms could be triggered by foods, allergens, and chemical exposures. He found that each had an individualized profile, but the symptoms could often be reduced or eliminated without standard drugs.
This was big news! Or at least it should have been. But Dr. Mandell could not get the Tourette Syndrome Association (TSA) to show an interest in his findings.
It all started with a young girl. . .
One day in the late 70s, Dr. Mandell was testing a girl for allergies. He found to his surprise that when she was tested for milk, she began ticcing and writhing uncontrollably. He had no idea why this occurred, but he did not forget the unusual response.
In those days, Tourette syndrome was rare, and Dr. Mandell had never seen a case. Later he happened to view a documentary on Tourette syndrome and immediately recognized his patient’s symptoms. He called the TSA and offered to test people free of charge in his office to see if they had an immune connection to their Tourette syndrome. The TSA passed his offer on to members, and 25 children and adults came to him for this special effort. 
Dr. Mandell found there was a significant link between TS symptoms and allergy in most of the patients in the group. Further, they were helped to varying degrees through allergy therapy, dietary changes, and/or avoidance of allergens and toxic chemicals.
The medical literature describes Tourette syndrome as “mysterious” because the symptoms wax and wane unexpectedly—they come and go. But, he recognized, this pattern is not always so mysterious after all. Environmental factors and diet could trigger symptoms in many cases. Families could have some control over Tourette syndrome!
Excited by his discovery, Dr. Mandell tried to get the Tourette professional community interested
FIRST: He informed the TSA medical board.
SECOND: He attended an international scientific symposium on Tourette syndrome sponsored by the TSA so he could share his work with those in the field. He took advantage of an open mike session to relate his findings. He later told me of his shock that “not one single person” in the audience showed any interest, asked a question, or followed up with him. Instead, he explained, they continued their programs discussing the serious side effects of drugs and how ineffective they were for Tourette syndrome.
I have on file a copy of a letter sent by Dr. Mandell to the TSA in 1983. In it, he addressed the refusal of the TSA to share the allergy connection with families. See below.
Excerpts from Dr. Mandell’s letter to the TSA, February 2, 1983
I have made a large number of clinical and laboratory observations in a series of Tourette syndrome cases that have clearly demonstrated the importance of allergic and allergy-like sensitivity to many dietary and environmental factors in this disorder. Treatment of these demonstrable sensitivities to foods, beverages, chemical agents, indoor and outdoor air pollutants, and airborne allergens (dust, pollens, mold, etc.) has been highly beneficial in many cases. Symptoms have been reduced in frequency and intensity, and Haldol dosage has been decreased, even discontinued. [Editor: Haldol was the drug of choice for TS in the ’80s.]
It is impossible for me to accept the frightening thought that this kind of information is not reaching those who need it so much. At the very least, each family should have an opportunity to make their own decision in a situation that is so important and may be significantly improved. —Dr. Mandell to the national Tourette Syndrome Association
Each child is a unique biologic and biochemical entity and my findings will not apply to every case of TS, but this is an extremely important area that requires immediate clinical application because many TS children have a great deal to gain and nothing to lose.
The parents of one of my most successful cases in Baton Rouge—her father was a doubting but now thoroughly convinced cardiologist—have tried in vain to reach other hopeful and searching parents to share the good news of their many important observations. Someone in your organization repeatedly refused to publish their report in your newsletter* and such activity is not worthy of a national organization. These actions can easily cause one to doubt the sincerity, or at the very least, the open-mindedness of your professional staff.
*After this letter of complaint, an excerpt of the cardiologist’s report on his daughter was included in a TSA newsletter, discussed here.
The type of allergy therapy used by Dr. Mandell, provocation-neutralization, was controversial. At the time of his efforts, conventional allergists were at war with a small group of doctors who considered their specialized approach more effective. In fact, 15 years later Dr. Mandell was put on probation by a state board unless he made adjustments to his practice, which he refused do. Provocation-neutralization is currently practiced in Europe, the UK, and USA, and there is still controversy.
The TSA’s inexcusable failure
THE BOTTOM LINE: A medical doctor selflessly investigated Tourette syndrome and shared findings that for the first time offered new treatment options for Tourettes. This work also dramatically changed the understanding of this condition.
Dr. Mandell did not claim the allergy connection applied to everyone, nor did he claim symptoms fully disappeared in all cases with his immune approach. But it helped many of them. His report could easily have been corroborated by interviewing all of the patients and families, had anyone at the TSA bothered.
The TSA boards should have explored this new avenue fully. Instead, they simply pointed out that double-blind studies on this are lacking and shoved it aside.
Parents should have been alerted that the foods they were feeding their children, and allergens and toxins in their own home, school, etc. might be making their child’s Tourette syndrome symptoms worse.
A PERSONAL NOTE: Since the start of our organization, Dr. Mandell was a valuable member of our advisory board. I was at his home in Florida the last time we spoke. We discussed the situation with the national Tourette Association and he expressed his dismay and frustration at their ongoing dismissal of his findings for so many years. Dr. Mandell knew he would not live long enough to see his work validated by mainstream medicine. As our conversation came to a close, he quietly asked with tears in his eyes, “Do you think my grandchildren will know that I was right?”
I assured him they most certainly would.
Coming next in Part Five: The TSA dismisses allergist Dr. Doris Rapp’s successful work with Tourette patients, featured on the Phil Donahue show
| Read the Other Parts of this Series: | ||||
| Part 1 | Part 2 | Part 3 | Part 4 | Part 5 |
| Part 6 | Part 7 | Part 8 | Part 9 | Part 10 |
Dear Sheila
Just a brief comment on your last post regarding the rejection medical institutions show regarding research on allergies, food and TS
Heavy drug intake might produce depression, distortion on personality beheaviour, dizziness, permanent tiredness…lack of projects in life and suicidal thoughs
As they say “when there is a will there is a way”….please carry on with your research and posts on this important topic.
Blessings
Magdalena
Thank you, Magdalena. You’re so right about the side effects of the medications typically used for Tourette tics and related symptoms. You’d think there would be an all-out push to find safer treatments.
This is extremely disappointing. In our experience, the link between allergies and tics is very clear. I thank your organization for pointing us in this direction years ago and leading us to a manageable solution.
Thank you for your continued efforts!
I’m glad you wrote, Jinna. And also so glad to know that our efforts were of help to you.
Let’s hope we can get this message out to more and more families, and keep advancing our understanding as well.
That last statement about Dr. Mandell’s grandchildren was heartbreaking. It’s a shame his work was not validated by mainstream medicine while he was still alive, but thank goodness for doctors like him who had this kind of foresight. He was clearly ahead of his time. This definitely sheds light on a broader issue, which is that we need to change the way we teach medicine and shift the mindset of patients who’d rather take a pill with side-effects than modify their environment or diet.
It really was sad when he said that, RMW. Though retired, Dr. Mandell had an office in his home in Florida with long tables along the walls, each piled up with research and case reports, video tapes of testing. Not just for Tourette’s but for many chronic conditions for which there were no good answers in conventional medicine. He was so dedicated.
I’d like to locate his family when this series is complete.
We have more information about Dr. Mandell’s efforts in our book Natural Treatments for Tics and Tourettes. He explained that after this first set of patients, he later did triple and double blind tests where the families did not know what foods were expected to cause symptoms (based on his testing); he still had good results.
Thanks so much for writing.
Is the TSA connected to big Pharma that would be keeping them from promoting non-drug approaches?
For sure they receive funding from the drug companies. They also raise money through public donations.
It would be pretty pathetic to think they are willing to harm families just to keep drug company money coming in, but we know that type of thing happens. I honestly don’t know what their motivation is.
One of the biggest problems is this field lacks a researcher who is so passionate about finding the answers to Tourettes that she or he welcomes feedback from every direction and listens to parents and other professionals instead of looking for excuses to dismiss their observations.
Thank you Sheila for your courage and voice for the frustration felt by many parents. I am a parent of a child with PANDAS/PANS which I see as a Venn Diagram with Tourettes and Autism since many symptoms are shared along with environment, diet and infections as triggers.
The Autism medical community also ignore parents success stories and continues it’s claims of Autism as a “genetic disorder” which is now at epidemic proportions. Like Dr. Mandell, they ignore Dr. Michael Goldberg’s evidence based science showing blood work of Autistic children having high titers for chronic infections along with severe allergies or Dr. Amy Yasko’s supplement support based on your epigenetics.
I also don’t think it is a coincidence that Dr. Mandell’s first Tourettes patient was in the late 70’s. That is when Glyphosate pesticide was first introduced into our food supply. We have since had an explosion of neurological issues starting in the late 90’s, including PANDAS and Alzheimer’s, since Genetically Modified (GMO) food now allows spraying of Glyphosate pesticide directly on the plant we are eating as opposed to the soil in the 70’s.
Neurologists, Immunologists, Infectious Disease, Gastroenterologist and Pediatricians along with all of us parents need to unite and let it be known we want answers and information that leads to healing and prevention not more drugs. We want researched based on what is working and to stop touting that numbers are increasing because we “missed a few” in calculations. Seriously, 1 in 10,000, to 1 in 50. Who is doing the Math?
I like your visual of a Venn Diagram, with overlapping of conditions for Tourettes, autism, PANDAS/PANS — and of course OCD. Very appropriate.
There has been such an explosion of neurological conditions and immune issues, and chemicals are surely behind much of it–pesticides being at the top of the list.
Babies are now being born with such a cocktail of chemicals in their bodies.
I know you would agree how frustrating it is everytime a new study comes out that shows the incidence of autism increasing and some “expert” always seems to be quoted saying that it is due to better recognition of the disorder, or changing guidelines. When, as you point out, the numbers are outrageous.
I know the autism and PANS communities are fighting an uphill battle.
Your call for specialists to unite with parents to find these answers is excellent. I always remember how the key autism researcher Dr. Bernard Rimland sponsored think tanks to which both professionals and families were invited–and they brainstormed answers to autism. And he frequently surveyed parents to collect information on what they were finding. That effort resulted in the Defeat Autism Now movement and opened new doors.
I really appreciate your well thought out response, and hope you will help spread the word and stay in touch. We’re open to any ideas on how to move this effort forward.
Shiela you are amazing and your website is so informative and educational. Thank you, Pamela
Thank you, Pamela. We are very fortunate to have a wonderful webmaster who volunteers his time for ACN Latitudes, as well as terrific doctors and families to work with.
I was privileged to speak to Dr. Mandell on numerous occasions. When I felt down about all the work I was doing to spread the word about the allergy connection, I would call him. He always took my call and talked me through it. He confided that he had been able to turn on and off other neurological diseases with his treatment as well but knew the medical community would not listen to him. He was in retirement and knew he would not live to see the day but encouraged me to continue…for us all to continue this path towards helping families understand that their environment, nutrition, toxins and pathogens are triggering tourette symptoms. Dr. Mandell was a dedicated physician. He will be missed.
ginger wakem
Ginger, I know you were the first to really connect with Dr. Mandell about Tourette’s. He told me he was grateful you were getting the word out, sharing what he found. Where does one find a doctor who takes on 25 patients FOR FREE!? And so much time and attention goes into an allergy approach like this. Really amazing. And then to not just be ignored, but be snubbed by the TSA is pretty tough to take.
I have a photo of Dr. Mandell by my computer and I intend to keep it there until the TSA gets exposed.
Thanks, Ginger!
Hi Mindy, thanks so much for sharing that–and congratulations on eliminating tics in your son for several years now–and helping others do the same! Any special tips to pass on?