Why the Tourette Association of America Should Be Investigated: Part 3
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.
| 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 |
I have had similar experiences to the parents discussed in this article and to those who commented in Part 1 of this series.
On the one hand, it is a MIRACLE that each of these parents and I managed to find the cause of the TS symptoms in our children, either with the help of Sheila Rogers or with practitioners, i.e. nutritionists, allergists, osteopaths, and homeopaths.
On the other hand, it is GROSS NEGLIGENCE and should be CRIMINAL that the mainstay organisations of our countries, the US, the UK etc, do not look into these relatively simple and non-harmful approaches to curing a condition which conventional, mainstay medical establishments say is generally ‘uncurable’ and whose only solution is to offer drugs whose side effects can be as damaging to a child’s physical and mental well-being as the condition itself.
For any doctors or the TSA or similar organisation reading about this, perhaps a little skeptically, I am writing as a mother and an expert in my own child who has had TS (based on 24x7x365 observations) for years. PLEASE THINK ABOUT ALL THE CHILDREN WHOSE LIVES YOU CAN POSITIVELY IMPACT BY BEING OPEN-MINDED AND CONNECTING WITH SHEILA ROGERS OR OTHERS SUCH AS ENVIRONMENTAL PRACTITIONERS.
THIS IS REAL AND IT WORKS. IT IS BASED ON SOUND PRINCIPLES, FAIRLY OBVIOUS ONES IN HINDSIGHT.
TO IGNORE THESE EFFORTS WOULD BE TO BE RESPONSIBLE FOR THE UNNECESSARY SUFFERING OF SO MANY CHILDREN AND THEIR FAMILIES.
PLEASE CONNECT WITH THOSE WHO HAVE HAD THE EXPERIENCE OF SUCCESS IN TREATING THIS DEBILITATING CONDITION. GIVE THEM THE CREDIT THEY ARE DUE.
Hello Penelope. I woke up to find your passionate plea for people to pay attention to these approaches for Tourettes. You are right on when you point out the lack of other satisfactory approaches for Tourettes. The comment about this being “fairly obvious in hindsight” struck a chord. It’s an area that researchers and the TSA have failed to look at–but it’s clear that holistic and immune system issues can affect the nervous system.
Unfortunately, families have been disempowered for so many years by being told there is nothing they can do about TS except drugs. You are clearly not in that camp! You child was lucky to have you as a determined mom.
Of course we aren’t saying this is the answer for everyone. But for some, it is everything! Thank you so much for writing from across the ocean!
I’ve just stumbled upon this wonderful call to arms series and I really hope the messages get through to TSA because it is mind boggling that so many success stories and testimonials go largely ignored by the first organization people and parents seek help from. I encourage you to consider using your platform to urge people (in an ongoing way) to share their testimonials and write letters and send them to TSA. They need to be barraged with non confrontational feedback, but not in spits and spurts- consistently and continually.
When our son was diagnosed more than a year ago he was in a bad way. The first person I spoke to was a volunteer at our local TSA chapter. They were so helpful and very calming, and gave me a list of doctors to call, support groups etc. Fantastic. But even in my emotional grief stricken state, I remember asking in that first phone call when we were discussing interventions if there are successful alternatives. To say the subject was dismissed is an understatement, I was told unequivocally, no, there was nothing, and “if there was something successful out there certainly an organization like TSA who’s sole focus is TS would know about it and share it with their stakeholders”.
We were days away from putting our son on meds, but serendipitously had a phone call with another parent who eradicated her sons tics through diet and nutrition and I happened to order the Natural Treatments for TS book. While I would have preferred more science behind the stories, the number of first hand testimonials of interventions that had zero side affects and certainly wouldn’t hurt my son could not be ignored. With our psychiatrist’s surprising and supportive blessing we went on our way.
After much searching and researching we realized we were looking for an integrative pediatric doctor who specialized in a “bio medical” approach to treatment. Who knew, and let me tell you there is no listing for that. It is so hard to find specialists to help you with this kind of journey especially one that can oversee the whole process. The listings tend to be for adults and range for anti aging to substance abuse. It was vital to us that we had doctor supervision for supplements and it was also important that we found someone who specialized in pediatrics. We found a very reputable DAN doctor in the end.
We changed our family diet, no wheat, dairy, food coloring, processed foods, no refined sugar… sound familiar? The doctor also put our son on a number of supplements some of which are natural anti inflammatories and calm his nervous system. Within weeks the results were mind blowing. 5-6 simultaneous simple and complex motor and phonic tics to one motor tic. A year later I keep waiting for the other shoe to drop at peek periods- school, holidays… Still one tic, sometimes none. I think we could probably eradicate it all together if we were more diligent but we follow an 80/20 rule with all the restrictions. It’s a good balance for us- his only tic is not noticeable to him or others and we are not robbing him and his brothers of every joy in life at things like birthday parties and eating out.
Recently our son has had comprehensive testing blood, urine, and stool testing through this doctor and we have made significant discoveries which have enabled us to have an even more solid roadmap in his treatment plan.
This whole time I am constantly riddled by WHY no one looked at all this as a first course of action? We have learned so much about the why and building immune and neurological system health since working with this doctor. If we weren’t so determined and motivated he would be on a cocktail of drugs right now none of which would be addressing the underlying cause or disruptions in his system. It’s unfair to assume everyone has the resources or inclination that we did to find alternatives. It’s a sad failure of TSA to keep this out of the mainstream and not make these resources and stories readily accessible to their stake holders.
Great comment, K.Knobel. Thank you for the details that will help so many readers; very well described.
Your quote is priceless. I was told unequivocally, no, there was nothing, and “if there was something successful out there certainly an organization like TSA who’s sole focus is TS would know about it and share it with their stakeholders”.
So great you had success and avoided the meds, and that your psychiatrist cooperated. It sounds like you’ve achieved a very good balance.
As you say, it’s a real challenge finding the right practitioner when professional help is needed to get to the root of the problem. Somehow that has to change.
I know it’s not easy to forge your own path as you have. Congratulations on all you’ve achieved.
Ugh. This is all so sickening to read about. Such a lack of care and consideration on the part of the TSA. Do they or don’t they want to help people with TS!? Thank God ACN has the courage and honesty…and decency…to tell it like it is and help people no matter what.
Hi ML, we may not have the media power of the TSA, but there is a certain strength that comes simply from telling the truth.
I’m looking forward to getting more of the story told as we complete the series of articles about the Tourette Syndrome Association.
It is a matter of decency and caring that seems to be lacking, as you say.
This is an outstanding series–thanks for taking on the TSA and exposing their hypocrisy. But as Upton Sinclair said, “It is difficult to get a man to understand something, when his salary depends upon his not understanding it!” Hopefully you’ll prompt enough of an outcry that the TSA will finally begin to understand.
Thanks for the note, Rick. We’re trying! I hadn’t heard the Sinclair quote before–very apropos.
I am truly thankful for finding Sheila Rogers on the internet after taking my son to doctors for years for his tics.
He was never diagnosed with Tourette’s but for over three years he was seeing a neurologist and taking blood pressure medicine for his tics, which were steadily increasing. I asked numerous professionals for advice and there was none except that hopefully he would grow out of them. The medical community and the TSA should be looking into and studying environmental causes, and teach doctors to treat the cause not the symptoms.
When I first started reading her book, we took small steps to change things in the home. I began using organic cleaning materials, cut down the amount of video games being watched and eliminated some of the obvious foods additives.
During this time I took my son for a comprehensive food allergy test. It took a few months to receive the report. During that time I took him off his prescribed drug, gave him magnesium supplements, and started keeping a food journal. As a single mom with a full time career it was hard to make substantial changes so I have done what I can within reason.
When we received the results back I was astounded. He was allergic to eggs, bananas, and vanilla bean among some other foods too. In the past he would eat all three items almost daily. We have not eliminated them completely, but have minimized their intake and I can say his tics are barely noticeable.
I know if I explained this to his pediatrician and neurologist they would say it is a coincidence because there is no medical proof.
New studies are needed so that this information is available to everyone who has a child or loved one suffering.
Thank you Sheila for opening my eyes and helping my son!
Thank you for your comment LG. It’s inspiring to read how you worked along, step by step, to find answers for your son. And so great that you decided to keep a food diary. I must say most of us might not have thought to eliminate something like vanilla, but one never knows what could be a problem. But looking at something that is eaten everyday is often a clue. You have accomplished a lot as a single parent! It’s certainly easier to reach for a pill than explore dietary and nutritional issues. Congratulations! And we really appreciate you taking the time to share.