Why the Tourette Syndrome Association Should Be Investigated: Part 5
Sheila Rogers DeMare, Director ACN
The TSA ignored the work of Dr. Doris Rapp, who confirmed an immune link to Tourette syndrome on national television 25 years ago.
Best-selling author Doris Rapp, MD, is arguably the most noted allergist of our time. She has appeared on the Oprah Winfrey Show, Larry King Live, The Phil Donahue Show, The Maury Povich Show, The Montel Williams Show, and Nightline with Ted Koppel to discuss the role of our toxic environment, allergens, and foods on behavior and health. She is now retired from practicing medicine but remains active promoting her message.
Surprising findings shared on the Phil Donahue Show
In the late 1980s, Dr. Rapp brought children to the Phil Donahue talk show who had a history of major behavioral problems and/or academic difficulties. She also brought their very relieved parents, along with videotapes of allergy testing from her practice.
Dr. Rapp explained and demonstrated to a national audience just what was causing adverse symptoms and behaviors in these particular kids. It was not bad parenting. Not an emotional or permanent genetic disorder. Not spoiled children willfully acting out. Not lack of academic skills. Rather, allergens, foods, and exposures to toxic chemicals were causing uncontrollable neurological reactions. And the good news was, the symptoms could be controlled.
Tourette syndrome was among the conditions featured.
Dr. Rapp has often said the allergy connection is not the answer for all children with behavioral or neurological problems, but it can apply to many. She went on to write the acclaimed best-seller Is This Your Child? Discovering and Treating Unrecognized Allergies in Children and Adults. It includes a section about “Edward” and his Tourette symptoms and treatment (see below).
The story of young Edward and his severe case of Tourette syndrome
As a toddler, Edward had major allergies. In preschool, he developed disruptive behaviors. He could be very aggressive, had mood swings, barked and made noises, and suffered terrible, painful motor tics. The family was desperate for help. He was diagnosed with Tourette syndrome and placed on a standard medication for Tourette’s but the side effects were not tolerable. His parents learned of Dr. Rapp and took Edward to her when he was six years old. The evaluation showed he was highly allergic to milk, eggs, seasonal allergens, molds, and some chemicals. He was so highly sensitive that some of the testing provoked negative behaviors or tics right away (this is not typical during allergy testing). Videotaping was done during testing.
Edward was extremely sensitive. It seemed like every time there was a major change in seasons, it would throw his treatment off and he had to be re-tested. If it hadn’t been for Dr. Rapp, Edward would never have made it into regular education and out of the Emotionally Handicapped program the school had placed him in. I rotated his foods, and faithfully kept him on a strict diet. ~ Edward’s mother to Sheila Rogers DeMare
Staff at the national Tourette Syndrome Association office reported they were flooded with phone calls and letters after Dr. Rapp’s TV appearance.
What should the TSA medical board have done after Dr. Rapp’s appearance on the Donahue show so they could give the best possible answers to parents and doctors?
Option One – The TSA should have:
- Requested to visit Dr. Rapp’s office to learn what she did for patients;
- Contacted Dr. Rapp and asked her to speak to the TSA medical board;
- Talked to Edward’s family to confirm the account;
- Revisited all previous reports received by the TSA from families and doctors regarding non-conventional therapy for Tourette syndrome to see if there is a pattern related to allergy, foods, toxins, and the immune system. (Spoiler alert: Yes, there is).
Option Two – The TSA should have:
- Dismissed Dr. Rapp as a misguided, uninformed doctor because her allergy approach was not mainstream;
- Told the public that studies do not suggest tics are triggered by food, environmental factors or allergens;
- Kept the public message focused on neurologists, psychiatrists, and drugs without opening the door to other therapeutic possibilities and medical specialities.
Take a wild guess. Did the TSA go with Option 1 or with Option 2?
Coming next in Part Six: Why Ginger Wakem started the Alternative Therapy Network for Tourette syndrome and why she gave up in frustration.
| 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 think it is criminal that the established medical community does not give this information to patients and their families. It is about $$$$. We have found the book “Natural Treatment for Tourettes” to be a godsend. I think all doctors treating patients with Tourettes should be given a copy.
Hi Nancy, Thank you so much for sharing your thoughts. I’m glad the book was helpful to you. And wouldn’t it be great if doctors treating Tourettes would read the articles by practitioners and families in the book on successful therapies for this disorder? I like that idea :)
That book was also a godsend to us… Six doctors including the chief of allergy at a well known children’s hospital could not help our son who overnight started severe tics. His other symptoms were severe allergies, chronic runny nose, sneezing, rashes, hives, gut issues plus more which all started with an infection. I purchased “Natural Treatments for tics and Tourettes.” and finally after 3.5 years we started to find the answer, which was food and leaky gut.
My son is now perfect except for minor seasonal allergies that are controlled simply by over the counter. Yes, it is criminal that these doctors will not OPEN THEIR MINDS. By the way, seeing a chiropractor on a regular basis was also part of the cure and well worth the money.
Thank you, Mary. Your report is so encouraging to others who have been to conventional doctors and not found the help they need for tics that come on suddenly. They should not give up!
Most doctors of course want to help their patients, but unfortunately they are not aware that tics can be treated without drugs, even when the tics are severe, and they are unaware of some of factors that can be underlying the symptoms. It’s so nice to hear that our book Natural Treatments for Tics and Tourettes was helpful to you.
I’m glad you brought up leaky gut, which can be such a big connection for kids with tics. It’s so great that not just the tics but also the major allergic symptoms he was experiencing have resolved.
I have a couple of questions for you:
Do you know what type of virus it was–and how did you treat it?
Thank you for answering these!
I agree. Criminal.
It appears the TSA has closed the door and conclude they already have all the bases covered. Just as so many drugs merely mask symptoms and do not go to cure the condition, they continue to mask the fact that they evidently have zero interest or consideration toward alternative approaches that can possibly allow those suffering to find relief. That being the case, how can they hold themselves up as having any sort of authority and consider themselves sincerely performing research concerning TS when they lock so many out? Those on such a large ego trip are usually really masking their own insecurities. Even solely from the level of compassion, one would think they would be willing to at least investigate any new data coming in from other doctors and patients with an open mind. But just like any stick in the mud, it eventual withers and dries up if it does not move with the flow of new energy. They should be investigated and maybe a bit of introspection will reveal why they are so closed minded.
Steve, you touched on some key points. For sure one of the biggest difficulties is that no effort is made to find out what is physically wrong with people dealing with Tourette syndrome. So as you say, efforts are only made to mask the symptoms.
But I have to tell you, your comment below really touched me. This is what is most appalling. Children and adults are suffering greatly. They have had their childhood ruined, their relationships affected, their education and careers impacted, and their self esteem deeply damaged. Meanwhile the TSA has been engaged in efforts to block this information from reaching the public.
That really hit home, Steve.
Who funds the tourette syndrome association? It is standard practice that these disease associations are funded at least in part by pharmaceutical companies making the strong drugs used for these conditions. Hence, any alternative outlook is looked at as threatening to their sponsors. When things don’t make sense, follow the money….
Hi Tim, You are so right, the Tourette Syndrome Association is funded in part by drug companies. I don’t know the breakdown of funding sources, but it is significant.
I like that phrase: When things don’t make sense, follow the money! Thank you for writing.
I do know, that TSA gets funding from pharmaceutical companies. They are narrowly focused on drugs, and genetics. I volunteered years ago for genetic study. They wanted my blood because I have TS, and my older son has TS. Thus far, neither the drug avenue, nor genetic studies have proffered any effective treatment, much less a cure. But, looking into environmental toxins, allergens, food (all the same) would go against their current allopathic model, and alienate the researchers, physicians, and funding…so the kids (and adults) with TS, like my son and myself don;t really benefit at all from TSA with regards to getting answers, help, treatment etc. Everything that I have learned, done, or accomplished in the way of symptom alleviation has been from natural health research finding, naturopathy, homeopathy, targeted nutrition, allergy remediation, and the book aforementioned by other commenters. The dangerous and ineffective drugs being given (often forced via shaming uninformed parents) is the real crime here. TS may make other people uncomfortable, but the drugs ruin the lives of these kids. Keep drugging children, and keep spraying agent orange (neurotoxic chem) on American crops. We should all be a bit more outraged.
Thank you for your comment, Leslie. It seems you’ve done a lot for yourself and your son, no doubt with no small effort. You are so right about what the drugs do. It’s not just that they often aren’t effective, but they can be devastating to some people. Wishing you and your son the best. If you have more specifics to share, please do so.
Thanks for your reply. I do want to add, that I know professionally, and personally, the efficacy of the medications utilized to treat TS. They are rarely effective, and when they are, it’s temporarily, and with incredible side effects, some of which are permanent. While TS can be treated to varying degrees of success with natural treatments, dietary changes etc…the potential damage done from rx meds surely outweighs the benefits (if any).
Interestingly, people with TS are tic free (a generalization, that has been documented) during activities that require being fully present in the moment. Along with the enviro-toxin-chem angle, which has shown significance, I would like to see studies on awareness/consciousness training. I have found what works for me, and am still researching and experimenting with my son’s tics. I have great hope that TS will be solved, or exposed for what it may truly be (neurotoxic damage), and fully understand that allopathic medicine, and traditional university/medical research is going in the wrong direction. All of the money donated to TS research via TSA is going to drug companies. Drugs cover symptoms, they don’t cure. I am so thankful for this site, and community. I want to share it with the world! So many children today are living with neurological issues. When I was in elementary, I seemed to be the only one with tics. Today, you can see 10 kids manifesting movement disorders in the cafeteria at the school during any lunch period. We have to ask ourselves, what has changed. Then, how do we help these children, and learn from our mistakes.
My son’s tics are almost completely mitigated by avoidance of allergens (gluten, dyes, chemicals), as well as with supplementing with vitamins and nutritional therapies that help alleviate the toxic load on his system. I’ve known forever that this isn’t in line with the TSA’s approach…much like the general medical community, anything natural (hence inexpensive) and done without the use of medicine (expensive) will be ignored.
Giselle, your comment is helpful, and I’m glad you mentioned nutritional therapies. That’s part of an approach used by environmental physicians like Dr. Rapp. It is so important that any underlying nutritional imbalances be treated, and that toxins in the system be dealt with. If you have a chance, please consider sharing more of your experience through our contact page on the website. Thank you!
In the early 1990’s, our son had such severe tics that he could not attend school. A leading neurologist here in Phoenix told us that he had never seen such a severe case, and doubted that there was a more severe case in the U.S. Calls to the Tourette Syndrome Association were frustrating and yielded no helpful information. My son had ear-piercing shrieks that could be heard for blocks. His physical tics would have eventually caused permanent physical impairment. We heard about the allergy connection through Ginger Wakem and took him to an allergist in another state. Within a short period of time, he was back at school. He went on to college and is a normal, successful, virtually tic-free adult of 32 now. Put simply, TSA was not there for us and gave us no help when we needed it so desperately.
Lynn, that’s just an incredible story. I can’t imagine what your family went through. Thank goodness your son is doing alright now.
Ginger is amazing and was so dedicated, trying to get this information out to families who needed it many years ago. We will be highlighting her efforts in our next article in the series. Thank you.
Unacceptable. I’m wondering if anyone has seen results with natural treatment for people who have a genetic history of Tourette’s? In other words, if you have clearly inherited Tourette’s, is it less likely to be effected by natural treatment? Or are what you’re inheriting just allergies/sensitivities?
Abbey, What we know at our organization is at an anecdotal level, but we definitely have heard from people with a family history of Tourette syndrome who have had significant help with natural approaches. These include nutritional therapy and the type of approaches done by Dr. Rapp among other types of approaches. It would be interesting to do a survey on this.
As you probably know, there is a lot of public interest in how the number of kids with childhood conditions are skyrocketing in number — autism, allergy, ADHD, depression, Tourettes, OCD, etc. The assumption is that environmental factors play a big role in these.
There is a saying that genetics loads the gun and the environment pulls the trigger. Some suggest that many of the people with Tourette syndrome have a genetic predisposition to it, and then depending on a number of environmental issues, the condition expresses itself in varying ways. It is known from studies that identical twins can have different manifestations of TS depending on environmental factors.
So glad you wrote. Sheila
My son had approximately 12 ear infections before he was 2 and started showing OCD symptoms at the age of 3. He was diagnosed PDD NOS (Pervasive developmental disorder not otherwise specified) and ADD at 5 and Tourette’s Syndrome this year at 10. The neurologist changed his ADD medicine to Intuniv to control his vocal tics. It has done absolutely nothing. I just changed pediatricians to an MD that also studies homeopathic treatment and I couldn’t get in with her but another doctor in her practice saw my son last week. She wasn’t familiar with your book but now she is. However there was a Dr. of acupuncture in the office. After one treatment of acupuncture my sons vocal tics have diminished to a just a few a day. We are planning to do 10 treatments and I have taken him off the intuniv. I really don’t have any faith in the AMA. Thank you for your book!
We are very interested in your comment Cindy–your saying that you think your allergic son who has a diagnosis of Tourette syndrome along with a developmental disorder and attention deficit problems seems to have benefited from acupuncture.
Weve had a small number of reports on acupuncture for Tourettes and would be interested to know more about what you are pursuing. Could you please get back in touch after the 10 treatments (while he is off the Intuniv) and let us know how your son is doing? At that time, it would be great if your acupuncturist could explain the type of treatment that is being used and any other specifics that might help others. (Of course we know that each child is different.) Thank you, and we wish you the best!
Dr. Doris Rapp’s book was a staple in our home. Her book had been out for a long time and most people concentrated on the ADD part of it. It wasn’t just about hyperactivity. It was the total package and just another mile marker pointing us in another direction away from mind altering drugs. She is one of my heroes.
ginger wakem
Ginger, Dr. Rapp really did a great service by writing her books. When I go back to them now I am blown away by how much she knew at that time–how ahead of the curve she was and still is. So few doctors listened. Our family relied on her books also!
Thank you so much for your dedication to this site and for your unrelenting commitment to helping families find alternative and healthier treatments for their children. I left the TSA website in utter despair and panic. Hopeless.
The implementation of the information and suggestions provided here and through the forums has equaled a tremendous amount of tic relief for our son and hope for our family. After researching we tried alternative options which have mitigated motor tics 90-95%. Removal of all household chemicals, avoidance of milk plus a mostly organic diet with supplementation has worked wonders. Humbly we are not out of the woods but extremely hopeful.
Thank you and kudos to all of the bold pioneers who dare to think outside of the box and advocate on behalf of children.
Heather
Heather, I apologize for being so late in posting a reply to this great comment! It is wonderful that with your efforts of removing chemicals, avoiding milk and going organic — plus supplements, you have been able to get the symptoms under control. I know it’s not an easy task. You family will thank you someday if not already!
I think most people go to TSA conferences with great hope that they’re going to find new answers, something to really help–yet the outcome is terribly disappointing. Utter despair, as you put it.
I hope you will keep in touch to share your story.