908-575-7350

Tourette Syndrome: Help Control Your Tics by Learning What Triggers Them

Presenter:  Sheila Rogers DeMare

View the webinar’s corresponding slides here        Download the Webinar

Tourette Syndrome was described in a professional publication as one of the “most mysterious medical curiosities on the planet. To date, the primary research has focused on genetics along with disappointing attempts to find suitable drug therapies. Yet for decades, patients have reported that they have noticed an association between tics and allergic, dietary, and environmental triggers. Tonight we will explore some of these triggers.

Sheila Rogers DeMare is the director of the Association for Comprehensive NeuroTherapy. She is a leader in the field of integrative therapies for Neuropsychiatric disorders. A national speaker on Tourette syndrome she is the co-author of the study “Nutritional supplements and complementary/alternative medicine in Tourette syndrome” (J Child Adolesc Psychopharmacol).

Comments(18)

  1. JoshB says

    Have you ever heard of Physical Vascular Therapy helping with TS?

    • Sheila DeMare says

      Sorry, but our organization has not received reports about this therapy for Tourette’s, and I am not personally aware of its use for tics. We would be opening to learning more.

  2. BrynnA says

    In your experience is there any evidence that homeopathic treatment will add any value.

    • Sheila DeMare says

      The term “homeopathic treatment” is a very broad term that ranges from expert professional advice to self-administration using products from the Internet or natural food stores.

      We have had some people contact us with positive success stories using homeopathy but there seem to be no published studies on it specific for tics.

      It is possible that homeopathy can have value particularly when an individualized remedy is prescribed by an experienced homeopath. Homeopathic experts on our advisory team have always said that to treat a chronic condition, it is best to consult a reputable trained homeopath for specific remedies that are individually determined.

      ACN/Latitudes.org does not recommend any particular homeopathic treatments for Tourette’s or tics. That said, homeopathy is often used for allergy, rhinitis, asthma, and food allergy—conditions which might overlap with some people’s tic symptoms.

      The homeopathic approach for a chronic condition tends to be different from treating a more acute problem, such as a cold—for which something like Zicam has been proven effective compared to placebo.

  3. DGodleski says

    What do you recommend when allergy testing does not show any allergy? Do we look further? Our doctor said there were no other tests we should do.

    • Sheila DeMare says

      Great question. This can certainly occur and it leaves the parent or patient wondering where to turn next.

      First, the type of tests performed are not indicated in your question. It is certainly possible that the person tested is not dealing with allergy.

      At the same time, please keep in mind that there are different approaches to testing taken by different types of allergists. There could also be symptom-aggravating issues related to food intolerance or chemical exposures that are not going to be revealed in standard allergy testing. As an example, a 5-year-old-boy with a Tourette’s diagnosis had very serious tics that were found to be caused by a previous arsenic exposure. Once that was dealt with, the tics subsided. An environmental physician or integrative doctor may be helpful in determining underlying biological imbalances or toxic overloads.

      You might want to read Doris Rapp’s book Is This Your Child: Discovering and Treating Unrecognized Allergies. It is an older book but could have good insights for you.

  4. JWeiss says

    I find it hard to believe my neurologist doesn’t know about this approach if it is true.

    • Sheila DeMare says

      Thank you for this—we often hear this comment, for not only neurologists, but for pediatricians, psychiatrists, and family doctors.

      Let’s clarify one thing before beginning this topic. What ACN/Latitudes.org promotes is an approach that “is true” for some people. We have no way of knowing how many within the Tourette community would find this helpful because we do not have the resources to study it, and researchers have not yet done so. What we present is feedback from physicians and the Tourette community so that others have the opportunity to learn from it.

      As a starter, the topic of environmental medicine is not taught in medical school nor is information usually shared on treating conditions with nutrition/supplements. So, those efforts usually take their own “track” outside conventional approaches. A recent graduate of medical school told me he “didn’t learn anything” about diet or environmental medicine as it relates to the nervous system during his training. Nothing.

      Neurologists of course want to help, but they are usually running as fast as they can to keep up with new information that comes in for numerous health conditions. They often rely on information from key advocacy and government organizations and that is where the breakdown comes in. The leaders in the field of Tourette’s have not investigated the role of diet and the environment, have not promoted research for these, and have not even encouraged doctors to gather information themselves.

      I have often thought how things would change if, when asked about diet for tics or Tourette’s, a physician said, “There aren’t good studies yet, but we know some people have found diet change helpful with tics. Why don’t you look into it. If you find something is making a difference, let me know.” That seems more helpful than sending people home to helplessly watch tics “wax and wane,” plus physicians could share what they learn. But for now, they assume that diet and the environment play no role and they discourage exploration.

      We have to recognize that old belief systems are painfully slow to change. For more than 20 years studies were done on the link between chemical food additives and hyperactivity before leading pediatric groups would admit that indeed, these can trigger behavioral change. But even with this, it is not something frequently discussed by physicians—the information is still trickling down to them. (Go to Feingold.org and look for Resources, then Research Studies to learn more about the research history.)

  5. kteabo says

    I can make changes on diet at home, but when my boy is at friend’s houses, school, etc there’s no telling what he will eat. Suggestions?

    • Sheila DeMare says

      Such a classic problem! First, congratulations on being able to make changes at home—that is a major first step. You need to approach it from two angles—1) Educating family, friends and school or other groups; 2) Teaching your child to self-monitor, for which age and motivation make a big difference and that is a topic in itself.

      The good news is that nowadays, in contrast to decades ago, the idea of different diets is quite common. Whether for personal reasons (i.e., vegetarian) or health (i.e, some children are dealing with allergic food reactions), many are not surprised that someone is on a different type of diet, and school staff are increasingly accustomed to making accommodations.

      Part of the issue that should influence your efforts is how serious a reaction could be. If your child is extremely sensitive you can approach it with the same seriousness you would if your child was a diabetic or had a peanut allergy. You can also refer to it as an allergy even if it seems a “sensitivity”—the term allergy is more easily understood by people. If you have a doctor’s note, so much the better.

      Look into requesting a 504 plan at school, if needed. (NJCTS has a webinar on this in the archives.)

      You can send items with your child, such as a safe drink versus the artificially flavored and/or colored sweet Gatorade being provided by the baseball coach. (Remember to avoid artificial sweeteners, though!) You can also educate coaches and others on providing healthier items as a matter of routine.

      Many parents send replacements for parties at school or afterschool snacks. You can request that food rewards not be given to your child. Some parents give suggestions for other types of rewards. (Many teachers think it is OK to feed students with their own items—it’s been customary for so long. But you have a right to ask that it not occur and find something else fun for your child.) Obviously, all these approaches need to be done in a way that the child doesn’t feel isolated or left out.

      Family members are often the biggest obstacle because they don’t want to change their ways, and/or they are sure they know best– or they want the enjoyment of giving treats to a child. Be firm but loving with them. Some parents simply say they won’t visit if the relative will not comply.

      Seek out discussion boards on these topics – there are lots of suggestions online that may fit your particular situation, as it is a very common concern but there are so many variables that affect the solution.

      Know that there will be times that everything will not go as you hope but you can then get things back on track!

  6. JimN says

    I never thought of my 6-year old as being allergic until I saw this. Where should I start to get her some help?

    • Sheila DeMare says

      You can plan to see an allergist and get some initial testing done. Find out if there are inhalant allergies, classic food allergies, or, if you have pets, whether that may be playing a role.

      Also, you can keep a food journal and monitor symptoms. Consider using some of the worksheets we offer on our website https://latitudes.org/njcts-triggers to help you explore the topic. Look at what others have found could be involved, and think about whether it could be relevant in your case. Also, we include a document with suggestions finding professional help.

      There is no indication that everyone with a tic disorder or Tourette’s has allergies, food intolerances, or chemical sensitivities. Sadly, until there is more widespread investigation into these topics, patients and families are on their own to find their way or to seek guidance. Such investigations are not going to come soon, based on the track record of the leaders in this field, so you are encouraged to play detective yourself and get professional help when needed.

  7. JoyL says

    This question is not quite relevant to your presentation on triggers, but my husband is not on board with the TS diagnosis and seems quite frustrated by our son’s tics. In your experience have you dealt with families who are dealing with this situation and can you recommend a way to handle it.

    • Sheila DeMare says

      Since your husband is frustrated with the tics, it seems you could tell him that there are some doctors and patients/families who believe something is affecting the nervous system and brain and probably causing inflammation, and they have found that making some changes helped reduce the tics. Those changes would relate to diet and the environment. Forget the diagnosis of TS and you would like his help in looking into this.

      You could also ask him to read Stop Your Tics by Learning What Triggers Them to see what others found helpful.

      Ask your husband to notice if he sees anything that seems to make the tics worse, from when the child gets up until bedtime, even if they cannot spend much time together during the day. Print out some of the worksheets and show him all the possibilities.

      Triggers are just one potential part of the puzzle; there are other approaches that could be useful as well. These include nutritional balancing, a thorough medical exam, and lab tests to determine the underlying causes of the tics.

      I hope this helps! Good luck.

  8. Jfisher says

    In your experience are there any triggers that are particularly universal in dealing with TS.

    • Sheila DeMare says

      This is a difficult question for a couple of reasons, but a good one. The biggest problem in answering this is that we don’t have any statistics, as this topic has not yet been studied for Tourettes (although it has been, for some other conditions).

      Based on feedback to our organization, there is nothing I could say is “universal.” We often hear about additives in foods as triggers for tics. To my mind, this is a no-brainer and foods containing them should be eliminated as a matter of course. So many options are now available that don’t contain these additives, some of which have been linked to cancer and behavioral changes. Most of these additives are prohibited in Europe, and companies in USA are starting to make the switch to natural because the public is demanding it.

      Some often find that dairy, gluten, and/or corn are a big issue—those are just examples—
      but not all need to avoid them. And, for some they do well just by rotating or minimizing the intake of a particular food –whereas others may need complete, strict avoidance. So, there is no easy answer to this question.

      Reducing sugars is an important step for many. Ideally, you could consider a list of potential food triggers and see which ones seem most likely in your situation and then begin to explore them. It is often recommended to first look at the foods that are most frequently consumed.

      Aside from food, dust and mold seem to be commonly reported within the inhalant allergies, but we don’t have any reason to think those are more important than, for example, grasses if someone has allergies that are impacting their tics.

      The most important thing is what affects your own case. It could be an unusual item rarely noted by others that makes the most difference.

      When seeking to calm the nervous system, all commercially scented products should be avoided, along with strong cleansers and typical pesticides and herbicides.

      A study with 200 patients with migraine found these odor-related triggers caused headaches for this percentage of people: perfumes (76%), paints (42%), gasoline (29%) and bleach (27%). Surprisingly, no such studies have been pursued for Tourette’s—while there are numerous studies on triggers and odor/perfume for migraine. Don’t wait for such studies on tics and Tourette’s to be completed before making the change: Just go natural.

  9. KSmith says

    In starting to consider triggers are there certain ones you could point us to begin with, our son is 10.

  10. Sheila DeMare says

    Hi – please see the answer above. Your child is at a good age to start noticing what might be aggravating his tics if he is concerned about them. We have a worksheet for children to do on our triggers resource page. It lists many of the common triggers for kids, with images, as a starting point. I hope you find some answers for him soon.

Comments are now closed for this article.