Why the Tourette Association of America Should Be Investigated: Part 1
Sheila Rogers DeMare, Director Association for Comprehensive NeuroTherapy
The national Tourette Association of America (TAA), previously named Tourette Syndrome Association (TSA), has established itself as the leading voice worldwide for Tourette’s. It has failed in its mission.
The organization has spent many millions in grants and public donations, yet they have failed to find the cause or cure for this condition. Meanwhile they have stonewalled those who presented viable new avenues to explore.To avoid confusion, throughout this series this organization will most often be referred to as TSA/TAA because many references relate to its operation under the original name.
Tourette’s is a medical condition that traumatizes and disrupts the lives of millions of children and adults.
The medical and scientific advisory boards of this organization have repeatedly been informed by physicians and families that a connection with allergy and the environment has been observed or personally experienced with Tourette syndrome. Yet they have not robustly explored this connection.
My connection with the Tourette Association of America
Our organization had an informal working relationship with the TSA/TAA for a number of years. I served as a volunteer liaison on alternative therapies, at their request, until it was clear that we were not able to change their focus. We urged them 25 years ago to pursue studies on the role of the immune system and the environment related to diet, allergens, and toxic chemical exposures, among other issues.
Due to a lack of guidance from the TSA/TAA, doctors continue to instruct patients that Tourette syndrome is an incurable genetic disorder. Recently the term “environment” has crept into the literature because it is increasingly clear, with new findings and the growing incidence of this disorder, that genetics cannot be fully to blame. But the TSA/TAA has not given guidance to families and professionals on what this might mean. The environment? What aspects of it? What can and should people do?
As an excuse for their lack of action, the organization hides behind the fallback line that “studies don’t support it.” Well, that’s because there aren’t studies. And there aren’t studies it is because TSA/TAA, as the world leaders, have not communicated to key research institutions about the urgency of studying these issues, nor have they funded them.
The lack of progress in this field is indefensible
It’s a crime for the TSA/TAA to profess to be experts and yet let children suffer because they have not told the medical community and the public that allergy could be playing a significant role in Tourette syndrome symptoms, that allergens can aggravate the nervous system and trigger tics.
It’s a crime to not provide information on the benefit of exploring the potential role of diet so families can learn if foods might be aggravating symptoms.
It’s a crime to not warn families that toxic chemicals in household and personal products may be adversely impacting their child’s nervous system.
And it’s a crime that a group of researchers in Turkey/MidEast who studied the association between Tourette syndrome, OCD, and allergy in 2014 had to refer to it as a “preliminary study.” After all these years, looking at this key link is only preliminary! But kudos to the researchers. ” The study abstract is here. Click here for the free full article.
The research abstract mentioned above includes this summary: “This preliminary study shows an association between allergic diseases and TS and/or OCD. The results revealing differences in associations between types of allergic disease (rhinitis or eczema) and neuropsychiatric disorder (tic disorder or OCD) need to be investigated in further studies with higher numbers of participants, and immune markers should be examined.”
Several small studies support a connection between allergy and Tourette syndrome, but conventional medicine chooses to ignore this vital clue that could improve prevention and treatment of this and related conditions.
In this series we will explore the medical politics and failings of the TSA/TAA that have left patients and families without answers to reduce symptoms while the mainstream message has remained the same for 40+ years. The overriding message from the leaders in this field is “Tourette syndrome is a baffling genetic disorder for which there is no cure.”
I predict that eventually this approach will be considered one of the greatest medical blunders of all time.
Editor, Sheila Rogers DeMare
Director, Association for Comprehensive NeuroTherapy
| 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 |
Sheila,
I absolutely agree that the connection between Tourette Syndrome and allergies should be studied using rigorous scientific methodology – actually, this should have been done years ago!
My now 20 year old son suffered from moderate Tourette Syndrome with symptoms starting at the age of four. Around the age of ten, my son went through comprehensive allergy testing and was found to be allergic to grass, weeds, trees, etc. Years of weekly or semi-weekly allergy shots at the hospital allergy clinic followed. The traditional allergy symptoms started to improve within a year of treatment and over time the TS symptoms slowly improved as well. Right after each allergy shot, however, tics would skyrocket – no use to even think about getting homework done. My son’s TS symptoms are now mild.
Obviously, we don’t know if the allergy shots were the reason for my son’s improvement – my son’s experience is a case study, at best. His nervous system or his immune system might have improved independently over the same period of time or some habit or environmental condition might have changed.
The most frustrating aspect is that if allergy shots indeed help allergic TS sufferers alleviate their TS symptoms, so many more children and adults could be helped. It seems to me that designing robust experiments to determine if allergy shots are an effective treatment for TS would be fairly straight forward. In addition, allergy shots dispensed in a clinical setting are very safe.
Sincerely,
Asa Nojd
Thank you for sharing details about your son’s Tourette syndrome and allergy therapy, Asa. I’m so glad his symptoms are now mild. As you point out, there was clearly an allergy connection since the tics would “skyrocket” after receiving each shot. Whether the treatment injections were responsible for his long-term symptom improvement is hard to say, as you point out.
There are different types of allergy testing and therapies, and one of the complications when looking at this issue relates to these differences.
Very good to know how things turned out for your family!
I am a cardiac surgeon and I have a 14-year-old son. When he was four he was diagnosed with severe Tourette syndrome. His symptoms improved slowly with antidepressant medication and beta blockers.
I began investigating the subject and reading the latest international literature. I was determined to use natural treatments rather than give him psychiatric medication like Orap.
I must thank Sheila Rogers and Dr. William Shaw, who have been my literary guides with their books Natural Treatments for Tics and Tourettes and Biological Treatments for Autism respectively. I also learned a great deal about inflammation and candida, and found the book by Paul Pitchford, Healing with Whole Food, very useful.
Once we began to implement lessons from these sources, the health of the whole family began to improve, beginning with my son.
I must say that with our efforts I was finally able to work ourselves out of this enigmatic maze. We found that my son’s symptoms could be brought completely under control when avoiding all the identified allergens along with a strict diet, free from gluten and associated products and dairy products which were triggers for him. He receives orthomolecular supplements of magnesium.
If he indulges in a food he should not eat, his symptoms start to return. When back on his diet, they are gone.
It is a pity that an institution like the Tourette Syndrome Association is now under suspicion for having other interests that appear to have little to do with the health of our children.
Dear Dr. Fuks, Many thanks for sharing your inspiring story here. It means a lot to have someone with your training and credibility supporting our findings that diet and other triggers can affect symptoms, and how with proper efforts and supplementation the symptoms can be eliminated, without toxic drugs. We hope that you will please keep in touch and share any additional suggestions you have for our readers.
The TSA claims that their “mission is to identify the cause of, find the cure for and control the effects of Tourette Syndrome.” The fact that they are blatantly ignoring environmental factors is disturbing. I remember hearing you speak at a Tourette’s conference in Montreal when you mentioned that there have not been studies published regarding the effects that diet, allergies and other environmental factors had on tics; yet, there were numerous examples of patients who showed positive results from allergy treatment, eliminating toxins and controlling diet. And you followed that by saying, “WHY WAIT FOR A STUDY?” It’s unfortunate that years later, there are still not extensive studies on allergies and environmental factors for Tourette Syndrome. ACN and Latitudes have been ahead of their time, and I hope the TSA catches up before more individuals have to suffer needlessly.
Hi RMW. Loved the way you put it — that the TSA’s ignoring of environmental factors is “disturbing.” Right on! I recall speaking at the Montreal Tourette program you attended several years ago when our book first came out (Natural Treatments for Tics and Tourettes).
Research and studies are important. But parents don’t have time to wait for them–especially at the rate the TSA moves! When something is common sense — like finding out if A, B, or C is making tics or other symptoms worse, then why not look into it?
Studies don’t solve all problems. After all, we have LOTS of studies on conventional drugs for Tourettes. They show that these strong drugs don’t usually work very well long-term, they often have terrible side-effects, and a lot of people can’t tolerate them so they stop taking them. (But yay! We have studies!)
Do we need studies of 100 people to find out that one person reacts negatively to milk, another person to dust and pollens, another to perfume and chlorine, someone else to all of these–and someone else to none of them? It would be interesting and validating, but there are so many variables when it comes to food and environmental sensitivities that people need to go ahead and start investigating for themselves. What matters is how your child reacts. And parents need to be strong and ignore their doctors when they are told that they must be imagining a reaction “because there are no studies to support this.”
What we do need are studies on the best way to address any underlying immune system imbalances in people with tics and other Tourette symptoms and learn how to know which person will be most responsive to which approach.
When I was a child, my mother took me to see a doctor to assess my facial tics. We were told by the doctor that the tics could not be cured, but that medication might help to minimize the tics. My mother reviewed the harsh side effects of the medications and decided against them.
Instead, she explored environmental factors and diet modification, since others with tics had reportedly been helped by addressing those areas. As a result, I ended up receiving a series of allergy treatments. In addition we made a point to avoid artificial colors/flavors, fragrances, and other toxins.
These simple changes made a huge difference with my tics! I will be forever grateful to my mother for deciding against medication that day in the doctor’s office.
It would be really great if the TSA would consider exploring some of these alternative treatments in future studies. I think they might be surprised at the results!
Thanks, CA! So great to read your message. If you have a chance could you tell us what type of allergy treatment you used?
Of course you were a kid so maybe you don’t remember.:)
Once someone sees firsthand that some of the triggers you mention have an effect on their tics, they are believers.
You are right, TSA would be surprised at the results if they actually looked into it!
Thanks for replying to my post. To answer your question, I used to get neutralization allergy shots twice a week and would also take sublingual drops under the tongue.
Ah, that’s one reason you may have had such good success. Typically (from what we have heard from others) traditional allergy injections don’t bring relief. (See the first post, from Asa Nojd when he states the injection made tics “skyrocket.”) Neutralization therapy aims to do just that– neutralize the reaction.
Sublingual drops for allergy therapy and sensitivities have been growing in recognition and popularity.
Thanks for the extra info, CA.
Sheila, you helped us when our son was 7. He had severe Tourettes and the side effects of the drugs were awful. We relied on Latitudes and your advice for years. An environmental doctor helped tremendously. Turned out our son was very allergic. He is now in college. Wish we could get him to control his diet better, but otherwise doing well. Keep it up. There’s lots of families like ours.
Music to my ears, TexasFam!
For severe cases, help from a professional who can look at any nutritional imbalances, possible allergies and sensitivities, check for underlying infections, and examine and advise on environmental factors is often needed and it’s good you could see that type of doctor. (For the reader, that’s what most “environmental physicians” would examine and treat.)
Congratulations on finding a way to get his Tourette’s more under control and seeing him off to college. Getting kids to control their diet is tough at any age, but especially once they are off on their own. Hopefully he will soon learn to self-monitor.
I’m sure I would remember you if you dropped me an email (please do!) Thanks, and wishing you all the best!
Seriously!? It’s awful to read that this huge organization won’t share information about environmental factors and how they impact TS. And what that commenter said above about being at TS support groups and being told that there are certain issues they can’t talk about? Yikes. Sounds like the TSA has something to gain from keeping people suffering. Big pharma is everywhere.
Thank God for people like you who are pioneering this path and actually doing whatever it takes to help people feel better. Thank you, thank you, thank you! Can’t wait to see how this unfolds as you continue to do your part. You CAN (and ARE!) making a difference.
MW, yes seriously–that’s how things are with the TSA. Sad but true.
For sure, the organization is funded in part by drug companies. It’s hard to know exactly why their advisory boards are so narrow-minded and clearly behind the times.
Is it professional ego–maybe neurologists don’t want to admit an allergist or immunologist might have better answers than they do? Is it medical politics? Money? A combination? I don’t want to get into their heads or presume to know. I just know they have failed the Tourette community.
Stay tuned and thank you for the reassuring note!
So many health organizations have their priorities all mixed up. They say they want to help people get better, but then they don’t explore the things like allergies and the environmental triggers. Why? Because there’s no big money it it for them? Because they can’t have partnerships with “not installing new toxic carpet,” but they can with all big Rx companies? I don’t know if the TSA is ignoring this topic because they stand to lose money, but something is definitely up and I agree with you – it’s time to do some investigating into WHY they don’t do these kinds of studies. Keep up the great efforts, Sheila.
Hi AVWim. I got a kick out of your comment that they can’t have partnerships with “not installing new toxic carpet.”! Ha.
You are so right, that a lot of the natural approaches that could help people — simply going green to avoid things that are toxic to their nervous system, for example — don’t bring in the big money and don’t easily get studied.
I do hope some serious investigation of TSA takes place, I agree with you. It’s been too long without real progress.
Hi Sheila,
It would be interesting to learn what influence pharmaceutical companies have in suppressing research into alternative therapies. You have helped people all over the world. The results speak for themselves.
Hi SG! To take your comment a step further. . . if we could find out exactly how much influence the pharmaceutical companies have over TSA, then we could find out how much of a role these companies play in the suppression by TSA of our our work.
This has happened repeatedly and is a topic for an upcoming post.
Thanks for the kind words.
Sheila,
Thank you for your passionate commitment to supporting suffering families through all the valuable information you share!! I could not agree with your Part I article more. We have been on this journey with our son for 6+ years now, and I am convinced that environmental factors are a key player in frequency and severity of tic symptoms. I am so very disappointed in the TSA’s narrow approach to tic treatment/prevention and to what appears to be an unwillingness to explore the positive effects of alternative as well as traditional approaches. I don’t want to discount the many good things that the TSA does, but the TS community would be better served by a broader approach. Sheila, set up your non-profit to fund alternative studies, and I will be the first to contribute!
Much gratitude and kind regards to you.
I’m with you, LLLaw, that TSA does some good work. Especially in workshops for schools and public awareness.
We would love to have our non-profit fund alternative studies. And thank you so much for your offer to contribute! We need a professional fundraiser or grant writer to make things happen. Right now we operate on such a thin shoestring that it would be hard to take any other project on.
If anyone can recommend a fundraiser or help with grant writing, please get in touch with me!
LLLaw, perhaps you would consider writing an article that could be published on the website anonymously to share what you have learned about your son’s conditions that convinced you the environment was playing a role? If so please drop me a note http://latitudes.org/contact-us/
Many thanks for your comment.
Thanx Sheila
I strongly agree that it is a crime for the TSA to turn a blind eye and to be so nonchalant while many are kept in the dark with what has already been discovered by ACN and others. The focus should not be on medical politics but to assist in reducing suffering so people can live “normal” lives. Nowadays we are surrounded with studies that demonstrate how holistically our food and environment are major factors in either increasing or decreasing our health. Fortunately we have ACN and associated medical professionals keeping pressure on the TSA to continuously demand following investigations no matter where they lead and expand the knowledge base. It’s high time the TSA climbed outside of their box and took notice of new evidence.
Sheila Rogers DeMare, MS Says:
March 25, 2014 at 4:24 pm
Nonchalant. I hate to say it, but that rings true. Well put, Stevepoly.
As long as the funding is coming in, they appear pretty satisfied with the direction they are going in. In one of my next posts on TSA I’ll explain how the medical board behaved when we were working together (using the term very loosely) with ACN Latitudes as an alternative therapy “liaison” to TSA.
Abram Hoffer,MD, a renowned and brilliant nutritionist who was on our advisory board until his passing in 2009 at the age of 91, once told me that it can take 20 years for medicine to accept new theories and practices–but that the field of neurology is much worse than that. I believe it!
Thanks for writing.
VERY interesting indeed. Having *just* returned from the TSA conference last week, I was disappointed to attend a panel discussion on Nutrition, Exercise and Coping only to come away with nothing more than antecdotal advice. None of the panelists had tried a GF/CF diet, and one joked that he was going to try a diet of one food a week to see how that went.
As someone who is working diligently to help my son with TS, I am interested to learn more about what ACN has to say and offer. We are just 5 weeks into allergy shots and I would appreciate any and all advice (have learned about sublingual tablets just in the “response” section).
Thank you all for your comments, I look forward to more discussion.
Hi Jan. I haven’t attended a TSA conference since ACN went to one in Washington DC several years ago so we could have a booth for our Tourette’s book. I noticed a session was offered on alternative therapies so I went. The room was packed with families searching for help. I was appalled to hear a panel of “experts” give negative opinions on almost all non-drug approaches people were interested in trying. I felt sorry for the audience, as they gained next to nothing. The problem was that the panel included experts in neurology and psychiatry, but not in natural integrative therapies. They simply did not know what they were talking about.
Here’s a parent report you might like to read if you haven’t seen it on our site: Here.
Conventional allergists take a different approach to testing and treatment than a smaller group of physicians who think the treatment dose should be calibrated to more accurately match the individual’s level of reaction for each antigen. Sublingual drops are one of the approaches these doctors sometimes use. Serial endpoint titration is another, among other techniques. And neutralization may be used, though this is not quite as common now.
I’m not suggesting a traditional allergist doesn’t help patients, just that families dealing with TS have not reported to us that tics respond rapidly to the standard allergy approach/shots.
I hope you’ve had a chance to read some of the articles on the site and see if you think your son could benefit. Dr. Albert Robbins (now retired) wrote an article for us on food allergy: here that you might find helpful.
We’re so glad you shared your experience and hope you can find help for your son. Your note validated my point on the lack of progress in the area of dietary intervention made by the Tourette Syndrome Association. Best wishes, Sheila
Thank you Sheila for all the hard work you’ve put into Latitudes!
I’m an adult with now mild Tourette Syndrome who once had severe TS as a child. Around the age of 12 I discovered Latitudes for the first time. At that time some wonderful and very special person bought me a subscription to the Latitudes newsletter along with the back issues of Latitudes and had it sent my way. This changed my life forever as my dad and I first started trying to treat my TS naturally. I had been on many different medications that either didn’t work or had too many side effects since the age of 5. I had been in and out of a few Children Hospitals along with Yale Hospital. The help of Latitudes brought us many answers in treating my TS. Since then I’ve treated my Tourette’s with supplements, neutralization allergy treatment, massage therapy, acupuncture, diet, detox, etc. At the age of 18, I was able to gradually stop all of the medication that I had been taking for my Tourette’s.
I totally agree it needs to be investigated as to why the TSA has not pursued studies on alternative therapies and TS. Over the past 20 years, so many people have found alternative therapies to be so helpful for their TS or their child’s TS, and it’s time for studies to be done on this! We lived in a very rural community, and my family was able to go to a TS support group one time when I was first diagnosed. It would have been nice to hear about alternative therapies from the TSA support group when I was five years old and just diagnosed rather than after seven years of dealing with severe Tourette Syndrome. We need studies to be done, so that all doctors are knowledgeable about alternative therapies to treat TS, TSA support groups should be able to share info/discuss alternative therapies for TS, and parents/families/individuals can get the help they need without having to turn to strong meds that frequently don’t help and/or have serious side effects.
Keep up the great work, Sheila!
Carolyn, it was very inspiring to read your letter. I remember meeting you many years ago. I recall learning that someone had helped you find our material, but I had no idea you were quite so young. That’s amazing. I can imagine how isolated you must have felt in a rural area. And it sounds like your father worked very hard to try to find help for you, going to one hospital’s specialists after another.
I’m so glad it worked out well for you eventually and you found the help you needed.
It’s good that you incorporated a number of therapeutic approaches. That’s why we use the term comprehensive neurotherapy, because for most people there is not one single approach (for example, diet, or supplements, or immune/allergy treatment, or avoidance of triggers) that restores their body to health.
To be clear, we do not suggest that everyone will respond to a particular type of allergy treatment, or that dietary changes make a significant difference for all cases, or that everyone with tics has a particular nutritional imbalance. Just as a group of 10 people with migraines may have a variety of causes for the migraines, so too the imbalances leading to tics can differ among individuals.
ALso, ACN never promises that everyone pursuing integrative therapies will meet with success. What we do suggest is that it is usually worth the effort. As it was for you. It takes determination to pursue the changes you did at a young age. I’m sure it hasn’t been easy. Congratulations!
Your note of encouragement means more than you know, Carolyn.
I hope the road ahead is smooth and rewarding for you. Sheila
Thank you for tackling a very controversial issue head on Sheila.
We were pretty much treated as “quacks” when we attended local TSA meetings and dared to try to discuss diet, environment and any other aspect of treatment for tics/OCD that did not fall into the standard TSA rhetoric.My son even spoke at a regional meeting about just how much better things were for him since he went off meds and followed the things we learned about in the Latitudes magazine and here at ACN…this was about a year into his “natural” treatments so we had clear proof of how much it was helping. No one ever followed up and it remained the same old stuff in their newsletters and research.
Some years later I was privileged to join you at one of their meetings to share just how well my son was doing…and we both know how that attempt again fizzled into nothingness on their radar.
They did have very helpful literature on advocating for education and educating teachers and peers about TS, and I do commend them in their fight to get TS recognized as a disability in the education system.
But the continued refusal to think (and fund!!) outside of their very narrow view really is an obstacle to educating physicians, parents and patients….and is depriving many TS kids of a better life. In some cases, like my son’s, their recommendations on medications, and referrals to physicians, psychiatrists and psychologists that tow their line, can be downright dangerous!!
I really hope your articles will draw lots of attention to this very vital issue, and that many will contact the TSA about it, in hope of a broadening of their views. After all….who knows how many children may actually be greatly helped by treatments that are a lot less risky than those the TSA promote. Just the testimonials by the many parents who have found ways to help their kids via ACN/latitudes should be enough incentive for them!
Hi Chemar!Thank you for the details on your efforts to spread the word of your son’s progress with natural therapies. I can feel your frustration–and share it. It’s very good for everyone to know, though, how much your son has been helped.
I should point out that the comments people have made here related to restricted information at group meetings is a general one–there are surely exceptions. I have spoken a few times at programs, including a Florida state meeting. Yet I have also been told that it is against the TSA policy. I think it depends if a support group leader is particularly open minded.
Our complaint is not with the well meaning people in the trenches working to provide support and education. It is with the advisory boards whose policy the rest of the organization reflects. The fact is that we have been “at this” so long, that many of the current board members are not the same ones there when we started. In fact, our Latitudes magazine that you refer to was a print publication from many years ago; that was replaced by an online version and now the premium membership.
TSA will not receive research proposals in integrative therapies until they make it very clear that it is worth people’s time and effort to prepare them. When they keep downplaying the value of natural therapies or repeatedly use the phrase “studies don’t support” this or that — when there haven’t been studies in the first place, they will continue to discourage innovative treatments. And they will keep saying they haven’t received proposals. It is self-fulfilling.
Keep up the helpful efforts with your son! We know popping a pill is much easier that the lifestyle changes and integrative measures families such as yours take. Sheila
I agree Sheila–it is a crime for TSA not to share information that would help millions of children and adults who live with Tourettes and the awful symptoms associated with this syndrome.
Evidently they themselves have not experienced watching their child suffer on a daily basis, feeling the pain of what they live with, what they have to deal with, from their fellow classmates, teachers, other parents and adults who don’t understand the symptoms.
I’m so thankful God sent me to Latitudes, to Sheila, who led me to Dr. Albert Robbins (who is now retired) but was an environmental doctor in Florida.
Our daughter is now doing very well.
So TSA, why not allow the information that is available to be shared with so many people suffering with Tourette’s? If you heart is in the right place for your people, why not? Families deserve to know there is a choice!!
Hello, SBC. I’m so pleased you had good results. I’m sure your story will help encourage other families. Because your initial comment was so descriptive we have moved it to a regular article that features your story.
Your kind remarks are appreciated, but I have to give the credit to Dr Albert Robbins, who unfortunately is retired, as you point out — and to you and your family for being so tenacious and dedicated to your search for health for your daughter!
You did a very good job describing your efforts (please see the article–it will be up soon!), and we’re so glad you took the time to tell us of your family’s journey and its happy ending.
Dear Sheila
I fully agree with you in every comment and evaluation of the TSA from New York. And I would add that doctors in general follow this line…..that is to say “no investigation or research about anything that is not the conventional medicine.”
I would add that the family, psychological environment, the stress and worries and personal problems of the patient play an important role in tics. Moreover, the human being should be treated and investigated as a whole and an individual….but that would give rise to many many alternatives for the TS treatment and that is what the traditional medicine dismisses.
I am the mother of Andres, who suffers from TS. We live in Argentina. Here, there is even LESS RESEARCH AND LESS UNDERSTANDING related to alternative treatments to TS….medication is prescribed by doctors for say, 7 or 8 years, non stop, and we all know these strong drugs have important side effects…but no doctor here will tell you this….we have experienced, as a family, that in the long term, these medication CREATE MORE SYMPTOMS FOR MY SON WHEN THEY WERE SUPPOSED TO REDUCE THEM. Amazing! Here in Argentina we have less chance to develop alternative medicines or even speak of allergies, PANDAS, or foods related to Tourettes.
We as a family have done our own research. I was so lucky to meet you Sheila and Dr. Albert Robbins during a trip to the USA. You both opened our minds to these other possibilities. Andres is now being treated by homeopathy and is making a concerted effort to leave medication behind. We know acupuncture can help along with avoiding certain foods and no sugars, wheat flour products, milk, etc. It makes a difference. Irazem which is a strong addictive drug which is prescribed for TS, creates a physical addiction. That is the name in Argentina. I believe it is sold in the USA as Abilify. It has many side effects.
Thank you Sheila and the many others who denounce this lack of research in fields that should and must be investigated for the sake of true medicine and for the sake of our loved ones.
Blessings to all and thank you
Magdalena Puebla
Buenos Aires, Argentina
Hi Magdalena, It is so nice of you to write a comment. I remember meeting you a few years ago and knew that you would stick with this until you found the answers you needed for your son. It must be quite difficult to get the help you need in Argentina, based on how you described the situation. We think we have frustrations here, but apparently we have more resources than you.
It sounds like the medications your son has tried have caused additional problems; I’m so sorry to hear that. I know that others reading this join with me in wishing him all the best in weaning off his medication and taking the measures that you have seen can be helpful. Many thanks for your input. I hope you will keep us posted on how your son does.
Hi Sheila~
My daughter has a PANDAS diagnosis (diagnosed both by Drs. Tanya Murphy and Sue Swedo).
After a year and a half of high dose IVIG, antibiotics, the medication Namenda, and more, my daughter was just about completely back to herself after strep throat had resulted in a sudden onset of acute neuropsych symptoms (too numerous and horrifying to list), including tics.
Recently, though, my daughter very suddenly developed a SEVERE complex motor and vocal tic that left her debilitated and housebound again for the past 2.5 months. I knew it was an autoimmune response. We tried every possible treatment from the physicians we saw (including IVIG, antibiotics by oral and IV route, steroids by oral and IV route, the drug Cellept, anti-virals, anti-inflammatories, etc.)
Then I went to a neurologist to see if a standard medication like Clonidine would possibly help her function. It was amazing to me that this top pediatric neurologist insisted there was no known cause or good treatment for tics. He gave her a Tourette’s diagnosis. He also kept telling me to increase her Clonidine dose, when it was clearly not working.
I finally got my pediatrician to swab her nose (looking for strep) and instead she had Methicillin-resistant Staphylococcus aureus (MRSA) revealed by the culture. MRSA is resistant to almost all antibiotics. After one week on Bactrim my daughter has suddenly stopped ticcing completely. I saw a decrease after 3 days, but, it took a week for the medication to work more fully.
I have no idea how these neurologists can look a person in the eye and say with complete certainty that it cannot be caused by an infectious or viral trigger, or, by allergies, etc. It is frightening and sickening at the same time.
I have no idea why my daughter wasn’t just given a nasal swab to start with. It is such a simple thing to do some blood work or a swab to look for various triggers for tics. There is no reason in the world why my 9 year old daughter needed to be subjected to all these medications, treatments, needles and potential side effects (blood pressure medication, steroids, really???).
I applaud you and thank you for your work. It’s time to open the minds of these doctors and make them accountable for their actions.
a PANDAS mom
Cleopatra, what a heartbreaking experience you and your daughter have been through. It is hard to imagine how helpless you must have felt. Thank goodness you had the tenacity and intelligence to find the answer you needed.
As you point out, the immune system can be a major player in tic disorders. It is a fundamental flaw in medical practices that most physicians don’t know to explore why there are tics, what is causing them. They don’t look at the child as ill and try to heal the child. This is because they have been taught otherwise, that there really is nothing they can do.
Unfortunately that leaves parents going from doctor to doctor in search of someone who will listen and help dig deeper. Let’s hope stories like yours can help open people’s minds. I know our readers join in wishing all the best and for a steady and strong healing for your daughter at all levels, and peace for you as well.
Even here in Scotland and the rest of the UK we face exactly the same problem.
I have lost count of the number of times myself and other parents have been delivered the phrase “there is no medical evidence…”.
This is really important to note…!
The burden of proof is NOT on the mother or willing doctor to prove that a particular treatment or change has been beneficial to the child. As long as the mother, doctor and child agree (if old enough) that it has been beneficial then that is proof enough!
The burden of proof falls on the medical scientific community to prove that it has NOT been beneficial; if that is indeed how they choose to spend their time. The children should not suffer whilst that debate takes place though.
In fact the whole “no medical evidence” argument is fundamentally flawed!
Those who are skeptical about these treatments, support their position by presenting what evidence exactly? No evidence! They present NO evidence whatsoever in order to defend their position of skepticism. “We haven’t actually tested that theory properly yet so therefore it cannot be true.”
What angers myself and other parents and is the real damaging part is the censorship adopted by these organizations. The spirit that was behind their creation in the first place has somehow been lost. The sole purpose should be to share information, ALL information if it relates to the condition.
These associations overstep their remit by limiting information and/or ridiculing the work of other doctors and specialists. Unfortunately it seems ego has come into play here and it is the child who suffers as a result.
All we want as parents is for doctors to listen to each other (and the parents) with open minds and respect. That’s all. That doesn’t happen though!
Ironically, we don’t bring our children up to behave in that way, do we? No, we don’t because we know the word that describes that behavior is “prejudice”. At what point does it become acceptable for adults to behave in this way when we actively encourage our children NOT to?
Grant Timothy
Scotland
Grant, your note is just excellent, so articulate and such important points.
I can’t sum it up any better than you have said it. I’ll be sure to circulate your comment.
Let me know if there is any way we can better connect with those you are in touch with in Scotland.
Thank you!! Sheila
I think we are missing the point if we wish to go after the TSA. They have been co-opted by the medical and pharmaceutical industries and their research interests therefore hew closely to what orthodox medicine and drug companies wish. For them it is about maintaining control and increasing the influx of dollars with which to sustain themselves and their narrow scientific efforts; if they can even be called science. If we know this, and we do, it then becomes our responsibility to continue to tell the truth and to provide alternatives and to quit asking those who have no intention of doing so to pay attention to us. To go after the TSA is a waste of time and energy. To ask them to follow up on our concerns is likewise a waste. When those who suffer with Tourette’s follow logic and reason (and they have done so in ever greater numbers during the past two decades) they increasingly seek alternative treatment modalities and the information that leads them in that direction. If the trend continues, and there is every reason to believe that it will, the TSA will have two choices; they can whither on the vine due to their own money-driven scientific recalcitrance or they can get on board with true, functional science. I suspect the former will occur but I will be hopeful for the latter. In the meantime I won’t give the TSA a second thought….not that I ever gave them much of a first thought. I have treated my TS (through a well known NYC cancer MD) very, very successfully for the past 21 years with a strict nutritional protocol, prescribed supplements and special detoxification routines and had I ever bothered to seek the consultation of the TSA or one of their approved lackey physicians they would have surely steered me astray because that’s all they know and all they wish to know. I choose better!
Hi enat–thank you for your thoughtful reply. I agree, the TSA is not going to change. Still, it seemed good to call them out, as so many families consider them the be-all and end-all. It would be great to hear more from you about what you have found helpful, how your MD went about coming up with the best plan for you. Maybe you would consider getting in touch with me through our Contact page?
I like your final comment on how you would have been steered in the wrong direction by TSA docs “because that’s all they know and all they wish to know.” That sums it up!
Hello, I actually have tics. It isn’t caused by allergies or anything. Also, stop trying to cure me. I’m not broken, I’m happy having tics. Yes they’re involuntary but I didn’t care until people pointed it out to me. And now they, whoever that is, call it a disease, that’s just silly.
I don’t have contact with the TSA nor could I care less for their approach of “curing” my tics. People yawn and have hiccups, why can’t I be allowed to have tics and stims?
A lot of people in the autism community embrace the idea of neurodiversity (I also am autistic). Why isn’t more people?