Sheila Rogers, MS
Director, Association for Comprehensive NeuroTherapy
Beyond genetics
A parent contacted the Association for Comprehensive NeuroTherapy (ACN) to report:
We have learned that our son’s Tourette syndrome (TS) symptoms can be triggered by environmental stimuli. For example, milk causes a “Mmm-mm” vocal sound in Don. A trip to an amusement park that included a ride on a diesel-powered bumper car resulted in tics that were far worse than any he’d had before . . . We went out of town for a week, during which time he was tic-free. Within minutes of returning to our home, which had been closed up with a strong air freshener, tics began. We have noticed that tics often worsen after mealtime. Pollens seem to increase tics. Smoke from a forest fire caused a neck twitch that lasted one day. . . .
Many people with Tourette syndrome (TS) report that certain foods, toxic chemicals, or other environmental situations make their tics worse. But how can this be if TS is a “genetic” condition? Research confirms that Tourette syndrome (TS) is a genetic—and an environmental—condition.
What does this mean? Just think of allergies. Someone can have a genetic predisposition to develop allergic reactions, but, as everyone knows, the environment can greatly determine the types and intensity of symptoms he or she will experience. In a similar manner, many people with TS report they are aware of certain triggers for their tics that affect the frequency, type, or severity of the tics.
It is generally accepted that stress, excitement, and fatigue can aggravate tics. But numerous other factors may also prove to be involved, and the more aware a person with TS is about potential triggers, the more likely he or she can identify them. In general, environmental factors include what we eat, see, hear, breathe, drink, touch, smell, and otherwise come in contact with. They can encompass natal and prenatal conditions, temperature and lighting, stress, emotions, and fatigue, as well as vaccines, medications, viruses, and bacterial infections.
ACN’s role in defining environmental triggers
For the past few years, the Association for Comprehensive NeuroTherapy (ACN) has been collecting information on what aggravates tics, with information coming from patients, families, and health care professionals. The responses have come through questionnaires, feedback at conferences, personally questioning physicians, and by gleaning information from letters received.
A review of hundreds of responses suggests a set of rather common stimuli, with numerous less frequent ones. Those less frequently reported may indeed be less responsible for aggravating tics—or they may simply be more difficult to recognize and/or less often considered.
The list we are providing includes relatively immediate exposures/foods for vocal and/or motor tics, in contrast to factors like vaccines or exposure to a toxin years before the onset of TS. Each item listed can have an impact on the central nervous system of some people with Tourette syndrome, but what is troublesome to one person may not bother another. I hope the discussion that follows and this preliminary list will empower families and patients to begin collecting their own information on triggers. I also hope it will encourage physicians and researchers to consider collecting and sharing similar information.
The waxing and waning of symptoms
When someone asks a doctor why tics can be worse on one day than another or why they may disappear for weeks, months, or even years at a time, they are usually told that this is what tics do—it is a characteristic of TS: symptoms wax—and then they wane. Unfortunately, this circular reasoning doesn’t answer the question.
Tics come and go because something within the body is changing. The tics are symptoms of that change. How many physicians empower patients to actively try to solve this puzzle, to find the cause of increased tic frequency or severity? How many suggest that people try to understand the conditions existing when the tics have subsided—what might have changed that allowed this tic-free or tic-reduced period? The answer, of course, is very few. Instead, most parents and patients feel powerless, and they usually accept the condition as a genetic medical problem over which they can have little influence.
Before going further, let me make a few points:
1) Not everyone may be able to identify triggers for their TS. ACN presumes that there are different subsets of TS; it is easier to recognize what aggravates symptoms in some people than in others. We do not know what percentage of those with TS experience at least one food or exposure that bothers them, though we predict that it is a majority.
2) The knowledge is not yet available to detect all possible factors that may be affecting tics. Consider what happens when someone has an outbreak of hives. While hives are recognized as an immune response to some environmental factor, in a majority of cases their actual cause goes undetected, even with careful investigation and professional assistance. Finding triggers for TS can be more complex than tracking down the source of a case of hives. Sometimes there are so many tics that it is extremely difficult to separate one potential cause from another. Or the cause could be so subtle3&Mac218;4like a low-grade chronic infection3&Mac218;4 that it isn’t even considered.
3) It is possible to be mistaken. One might blame an observable increase in tics on “dairy” because a flare-up in symptoms regularly occurs after eating ice cream. Yet it could actually be the artificial flavors, corn syrup, or chocolate chips in the ice cream that were to blame—or it could be that all of these items are culprits, including the dairy.
4) Repeat observation brings the best results. Assuming a connection between a single-incident stimulus and an increase in tics can be misleading. So many factors can potentially be involved that it often requires record-keeping and repeat occurrences to be sure.
From a father:
Neither growing up with a chronic tic disorder myself nor having a brother with Tourette syndrome (TS) prepared me for the day when my young son began showing signs of TS. I was dismayed to learn that progress toward a realistic treatment or cure had not been made over the last thirty years. I refused to put my son on the drugs that my brother had taken himself off of due to negative side-effects. My son also showed mild signs of AD/HD. Ritalin was not an option, as that could have aggravated his TS. My only hope was the abundance of success stories in Latitudes.
My wife and I noticed that tics worsened after eating dairy products and corn chips (with no apparent reaction to blue corn). Upon RAST blood testing, he was found to be allergic to milk, corn, oats, and certain fish. After eliminating the offending allergens from his diet, we observed a 99 percent reduction in his tics. The only tic remaining was a verbal murmur in the morning and evening. After putting a HEPA air purifier in the house, the verbal tics disappeared. We will have additional allergy testing to see if there are further connections.
Unless he eats something in school that sets him off, my son is tic-free. He also has undergone a complete change in disposition. He no longer gets overly frustrated, and he’s happier more of the time. His behavior in school has also improved. The medical profession tends to dismiss such success as spontaneous remission. I know that is not the case, because I can reproduce the tics by introducing the offending [items] back into his diet.
Our success did not come easily but has been well worth the effort. I recommend to other parents, once you know you’re on the right track, don’t give up. If you run into a setback, do more investigating, keep looking, and chances are you’ll find you’ve missed something.
I’ve spoken with some who say they have successfully “tried alternative approaches” but on discussion I usually find that they didn’t fully follow the plan. A typical response was from a mother who learned her child with TS was allergic to peanuts. She commented, “But I couldn’t possibly take him off peanut butter—he loves it too much. In fact, he eats it every day!”
Reprinted from Latitudes
Why bother looking for triggers?
The purpose of identifying environmental insults that aggravate tics is, of course, so they can be avoided whenever possible. The list of potential triggers for tics is extensive. ACN suggests you commit to making a serious effort for six weeks or more to see if you can find a connection between tics and aggravating environmental factors. With each discovery, you should feel more empowered.
Will you find all the answers you need? That’s impossible to say. But given that TS can be a lifelong condition, you can at least decide to make an effort. It would be a shame to look back in fifteen years and say, “I had no idea the food I was giving my child for breakfast was making the tics worse.” Unfortunately, we’ve heard many such comments.
Remember—we are all biologically different.
Wouldn’t it be great if all cases of TS were identical? Everyone could take one prescription medication that would act in precisely the same manner for each person. Yet we know this is far from the case. Finding a suitable drug to treat TS usually involves experimentation—trying one drug for a short time, adjusting dosage, then switching or adding different meds in an attempt to achieve tolerable side effects and long-lasting results.
Why is there not a one-size-fits-all medication for TS? Because people are biologically different. Please remember this when you review the list below. Don’t give up after exploring just a few items listed as common ones, and don’t be surprised if you find new ones not on the list. Don’t limit your investigation solely based on other people’s findings.
About those who shared information with ACN
What is remarkable about trigger identification for TS to date is that patients and families have mostly discovered aggravating factors on their own. They have usually done this without the support, guidance, or suggestions of their regular medical practitioner. In fact, their exploration is often met with discouraging remarks or resistance. Each person who has shared with ACN on this topic should be commended for thinking outside the box and for taking the time to help others.
The environmental factors listed below are informally grouped according to the rate at which they have been reported to ACN. There is no connection between how common a trigger may be and its impact or severity. As an example, exposure to chlorine, which was not highly reported, could potentially cause a more significant reaction than caffeine, depending on individual sensitivities.
A preliminary list of the triggers reported to ACN
Most Common (in alphabetical order):
Alcohol
Artificial colors and flavors
Cleaning chemicals
Caffeine
Chocolate
Dairy
Dust
Excitement
Infections (bacterial/viral)
Molds
Perfumes/scented products
Pollens
Preservatives/MSG
Stimulant medication
Stress
Sweets/sodas/cane sugar
Reported, but less frequently (and not necessarily less troublesome)
Artificial sweeteners
Carpeting (new)
Carpeting (removal)
Cell phone use
Chicken pox
Chlorine
Clothing/fabric sensation on skin
Corn
Dental related causes (spacers, losing teeth)
Dry cleaning odors
Fabric softener
Feeling Hungry
Foods—numerous; most common ones listed
Formaldehyde
Fumes from fuel
Heat (temperature increase)
Hepatitis B Vaccine
Lawn treatment
Light (flashing, bright, or fluorescent)
Medications (antihistamines, decongestants)
Nitrates/processed meats
Noise
Orange juice
Paint and thinners
Pesticides
Smoke
Television
Wheat
Yeasty foods
Video games
Where should families/patients start?
Keep a log. Make notes on the occurrence or state of tics at regular times during the day, such as upon awakening, after breakfast, at lunch (when possible), after school or sports, etc., and before bed. Use a recording method that is comfortable for you. Note what might have been responsible for an increase or decrease in tics, such as foods eaten, a special activity, a particular location, a new shampoo, renovations in the home, or lawn treatment. If you’re a relative of a child with TS, in addition to your own observations, you can ask what he or she thinks may have caused a reaction and try to spark an awareness of the situation.
Sometimes people feel so frustrated with the process of watching for triggers that they throw up their hands and quit. Our advice is this: if you have ever observed any situation or stimulus that you know resulted in tics getting worse, you at least know that the cause and effect connection is real. You know factors beyond genetics are within your understanding and, hopefully, within your control. Be patient and thorough as you begin to explore other possibilities.
Let’s say you have a son, and his tics seem worse after a baseball game. Was it the stress of the game? The Gatorade the coach passed out? Fatigue from playing? Summer heat? Pesticides sprayed on the field before the game? It takes detective work, and it’s not always easy. Don’t expect to find your answers all at once.
Hang in there
ACN recognizes that most people are already stressed, that they are already emotionally or otherwise consumed just from dealing with the condition of TS, not to mention life’s universal daily stressors. But if connections are found between tics and environmental stimuli, it can be a life-altering experience. Keep noting the intensity, frequency, and types of tics, as well as possible related factors. Watch for a pattern.
If your threshold for discouragement is too low, the effort could end prematurely. Even though you may have found a few apparent culprits that increase tics, when a situation arises for which there seems no explanation, it is human nature to begin to doubt the entire process—particularly if you are not receiving much support for this effort from others.
What next?
Once aggravating factors are identified, the next step is to determine what you’re going to do about them. Parents frequently contact us and say, for example, that they know “x, y, or z” increases their child’s tics—but, they add, how could they ever withhold these items or situations from their youngster?
Parents should understand that a child with TS has an illness. His or her nervous system is hypersensitive or hyper-excitable, and it needs to be thought of in these terms. If indeed something is making the symptoms worse—something that can be controlled—then it’s important that you, as the parent, do your best to help the child avoid those items. Adults with TS can make these decisions for themselves. Just as many adults decide that they prefer living with their tics to enduring the side effects of certain medications, they may also decide to continue indulging in a particular habit they know aggravates their tics. That is their decision. But a child should be provided with the most wholesome environment possible, and this is naturally the responsibility of the parents. Other preventive and medical approaches can be pursued to strengthen the immune and nervous systems in an effort to reduce the level of sensitivity to the environment.
Trust yourself
ACN hears frequently that someone was able to identify at least one trigger for tics, and when they told a physician or psychologist, the response was, “That’s ridiculous,” or “It’s a coincidence,” or “You’re wasting your time” in these pursuits.
This is medicine at its worst. After all, TS is referred to in the literature as a “mystery.” There is no lab result to verify its existence. The best specialists in the world do not have all the answers. Yet patients and families are coming to professionals around the world and offering clues to help solve this mystery. More frequently than not, they encounter a deaf ear and may even be discouraged from further exploration.
Do you have something you can share?
We hope families, patients and healthcare professionals will share findings on what they have learned can increase TS symptoms. Please write to acn@Latitudes.org and put Triggers in the subject line.
We recommend the following reading to those who are serious about finding potential triggers for tics:
Is This Your Child? and Is This Your Child’s World? by Doris Rapp, MD
Why Can’t my Child Behave? Jane Hersey, Feingold Association
Coming soon: Tourette Syndrome: New and Alternative Treatments (www.latitudes.org)
Copyright: Association for Comprehensive NeuroTherapy. Latitudes is a quarterly publication of the Association for Comprehensive NeuroTherapy (ACN). Every issue includes information on non-toxic approaches to autism, Tourette syndrome, learning disabilities and attention deficit disorder/hyperactivity. Subscription: $85 professional, $45 regular, $22 hardship/student. Order online: www.Latitudes.org