Tourette Syndrome

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Tourette Syndrome – The Environmental/Allergy Connection

– written by Albert E. Robbins, D.O., M.S.P.H. (used by permission)

Answers to Commonly Asked Questions

Is there an environmental or allergic connection to Tourette syndrome (TS)?

Yes. Many individuals have found that proper evaluation and treatment of underlying allergic disease, along with dietary and environmental controls (lifestyle changes) gave significant and sometimes profound relief of TS symptoms.

When was the allergy/environmental connection first discovered?

About 13 years ago, three prominent physicians in the field of environmental medicine independently reported the connection based on clinical practice: Doris Rapp, M.D., Theron Randolph, M.D., and Marshall Mandell, M.D. All found that TS symptoms often improved with related therapy.

The topic was also addressed in a 1983 newsletter of the Tourette Syndrome Association (TSA). The article included information received on TS and nutritional deficiencies, food allergies, chemical sensitivities, and typical allergens. Accounts included were said to be "quite representative of many others received" [by the TSA]. One was from a cardiologist who had taken his daughter to a clinical ecologist [environmental physician]. He wrote, "It was found that my daughter, though she had no typical allergy symptoms, is allergic to many foods, some molds and pollens, and is highly sensitive to chemicals. She was placed on a [special] diet and is being desensitized to molds and pollen. I eliminated as many chemicals as possible from her food and environment. While on the diet her reduction in tics was about 85%. Off the diet… within two days her tics… significantly increased and within a week had dramatically increased; emotional and intellectual patterns that I had not necessarily associated with Tourette syndrome also reappeared."

Eight years ago, Ginger Wakem's son, who had severe TS, responded dramatically to environmental medicine. Ms. Wakem tried to spark interest in the medical community; when she had no response, she started the Alternative Therapy Network so other families could have this information.

Then, at the last national TSAS convention, a session was held on alternative therapies. Dr. Alan Naarden, from the TSA medical committee, reported on a survey undertaken by the TSA related to nondrug treatments. He explained that environmental medicine was the most frequently reported successful therapy. Nutritional supplementation and the Feingold diet had also resulted in positive results for some.

In 1994, publication of the newsletter "Latitudes" began under the direction of Sheila Rogers. It focuses on non-pharmacological approaches to TS with an emphasis on the environmental/allergy connection. It is published by the Association for Comprehensive Neuro-Therapy (previously Alternative Therapy Network).

So, as you can see, this is not a new concept. Unfortunately, studies have yet to be pursued.

What percentage of individuals with TS can benefit from environmental medicine?

We simply don't know yet because studies have not been conducted. But, there have been enough individual observations of cases with dramatic improvement that the subject is certainly worthy of comprehensive study. Further, all those with TS should be made aware of the possibility that allergenic and environmental factors could be negatively impacting their TS.

Should everyone with TS be evaluated environmentally?

Yes. One should assume that there may be allergic/environmental factors causing or aggravating the syndrome until ruled out or proven otherwise.

What kind of physician can perform the appropriate environmental evaluation?

One who is a properly trained specialist in environmental medicine and who utilizes the appropriate investigative techniques. Allergists trained in environmental medicine utilizing Serial Dilution Endpoint Titration Skin Testing techniques are also qualified.

How does one search for environmental and allergic etiology?

A review of the comprehensive environmental, nutritional, and general medical history usually gives clues for further evaluation and recommendations for lifestyle changes.
Avoidance by patient of commonly suspected triggering exposures may help identify environmental offenders. (Example—animals, cigarette smoke, perfumed products, dusty or moldy furniture, commonly eaten allergenic or addictive foods, alcohol, pesticides, aerosol sprays, some cosmetics, preservatives, and some drugs)
Blood tests may be done to screen for allergies. However, for definitive treatment of environmental allergies affecting the nervous system, skin testing must be done. Appropriate treatment of multi-system allergies requires a special test method labelled Serial Dilution Endpoint Titration (S.D.E.T.) or Maximum Intradermally Tolerated Dose (M.I.T.D.—also coined the Lee-Miller method for the allergists who developed it).
Investigation of other toxic, infectious, immunologic or nutritional factors that may be playing a role in aggravating the illness.

Toxic Evaluation may include testing when indicated by the medical history for: heavy metals such as lead, mercury, aluminum, arsenic, and cadmium (hair analyses and 24-hour urine tests); blood pesticides and acetylcholinesterase enzyme tests; blood organic solvents. Sometimes exposures to odorous paints, solvents, glues, and other volatile organic chemicals in the home environment, and even exposure to pets, may also require evaluation.
Infection Evaluation may include cultures that look for yeast and fungal infection, bacterial, parasitic or viral infection. Tests for bacterial or fungal allergy may be necessary. Stool, urine, saliva, or sputum may be evaluated when indicated. Sometimes evaluation of the home air quality for a source of infection, including mold or bacterial growth, is necessary.
Immunologic Evaluation may include blood tests for immune deficiencies or autoimmune disease if the medical history is suggestive of an immune problem.
Nutritional Evaluation may include blood and urine testing for vitamins, minerals, and amino acids when indicated.

How does one discover relationships between environmental exposures and TS?

Once all appropriate testing is done, dietary and nutritional factors have been corrected, infections are eliminated, sources of toxic exposures removed, and allergies are appropriately treated, then the symptoms usually diminish or are eliminated. Sometimes only a few key environmental factors must be eliminated or addressed for symptom relief. The goal is to eliminate or minimize environmental hyperreactivity; there appears to be a multiple exposure level threshold effect.

Initial evaluations with extensive expensive testing may not be indicated when there is only suspicion of environmental etiology. The environmental investigations for causative factors can be systematically done over time since these investigations are time consuming and burdensome financially.

What are the susceptibility factors that may modify an individual's response to environmental agents?

General: age, sex, nutrition, smoking, alcohol, exercise, other lifestyle issues, stress and behavioral factors, and family history
Existing allergic medical conditions—atopic conditions, chemical allergies and asthma
Existing neurologic conditions—genetic or environmentally induced
Infections—previous or current
Immune dysfunctional states—genetic or environmental
Chronic diseases—genetic or environmental

Why is the environmental medical history so important?

Unless an environmental exposure history is pursued, the etiology or cause of the diagnosis may be missed, the treatment regimen prescribed may be inappropriate (possibly eliminating or masking the symptoms but not eliminating the cause), the exposure to causative or aggravating agents can continue, and the illness may progress and become irreversible. Also, the opportunity is missed to alert others similarly exposed and at risk.

What are the most important general concepts to understand when approaching TS from an environmental medicine orientation?

Some effects of environmental exposures develop only after a long latency period. For example, exposure to lead in the water supply, or mercury in food or the home, may lead to neurologic symptoms months or years later.
It is the "cause" that distinguishes a disorder as an environmental illness. For example, one may have TS along with behavioral problems and/or respiratory symptoms. Pollen allergies, and multiple food and chemical allergies, may be factors triggering or aggravating the severity of the symptoms.
Environmental illnesses cause, aggravate, or mimic well recognized disease entities or syndromes. They are the great "masqueraders" in medicine. A child developed TS symptoms after moving into a new home with exposure to formaldehyde in the furniture. Removal of the furniture from the home helped decrease his symptoms.
Disease induced by environmental (physical and chemical) agents cannot be distinguished from other diseases except in rare instances. Exposure to a drug or other chemical may cause a seizure, or a ticcing. It may also cause heart irregularities, anemia, liver toxicity, or kidney dysfunction.
A major problem in identifying an illness related to environmental (toxic/allergic) exposure is that the symptoms are usually nonspecific and can involve any organ system. Some individuals have a "target organ" that is affected by environmental exposures. In asthmatics it is the lungs or airways that are affected by environmental agents; others may experience headaches, joint pains, or skin rashes. Those with neurological allergies or sensitivity may develop behavioral problems or ticcing. One may think of it as a swelling or hive of the brain in response to an allergenic or toxic exposure; only the behavioral or neurologic manifestations are visible since one cannot see the brain (in contrast, the nose might sneeze and lungs may wheeze).
Many illnesses (including TS) that are caused or aggravated by environmental agents (pollen, dust, mold, food, dander, chemicals) become chronic and thereby show no variation in exposure pattern. Sensitization, masking, maladaptation, and bioaccumulation may occur.

Sensitization: Once an individual becomes sensitized or allergic to a substance, repeated exposures cause reactions to smaller and smaller amounts of that substance.

Masking: Frequent daily exposure to a sensitized substance leads to a masking effect; the link between the exposure and the symptoms cannot be determined until there is a break in the exposure pattern. This usually requires avoidance of the substance for a month, sometimes longer. Unmasking the offending agent occurs when avoidance of the substance relievers or significantly diminishes symptoms, and then reintroduction of the substance causes symptoms to occur immediately. Avoidance of an exposure decreases hypersensitivity.

Maladaptation: This occurs when the body is attempting to tolerate an offending environmental agent that it cannot tolerate; symptoms are the result of this maladaptation.

Bioaccumulation: When a toxic chemical such as lead or pesticides accumulates or builds up in the body's tissues, this sets off biological regulatory system abnormalities which are manifested as bodily symptoms.
Diagnosis of an environmental cause of an illness cannot always be made with certainty because the causes of many illnesses are multifactorial. Genetic, nutritional, biological, immunological, endocrine, environmental, stress, behavioral, and other life-style factors all contribute to the development and progression of illness. Looking at all the susceptibility and resistance factors is important in the development of a preventive approach to any chronic illness or syndrome.
Neurobehavioral problems and symptoms are the first clues in many environmental illnesses. Behavioral problems and neurological symptoms should not be dismissed as purely of genetic or psychological origin without taking a thorough environmental medical history and then removing the patient from the suspected offending environment (unmasking). Treatment with chemical drugs may be inappropriate or necessary only as a "last resort" when all other appropriate environmental evaluations and investigations and procedures have been utilized and exhausted. Further addition of chemical drugs to a chemically sensitive individual may complicate the illness and lead to further progression of the illness. (First, do no harm!)
Vague neurobehavioral symptoms in children and adults may be the norm in some environmentally induced illness. This is a clue to search for an environmental cause. This statement is a "maxim" of environmental medicine. Certainly the symptoms of TS fit this criteria for further environmental evaluation.
The sensitivity of the brain to allergenic and toxic substances may provide an early barometer of their adverse effects.

That symptoms can develop in an individual on exposure to certain environmental (toxic/allergic) agents may be an early warning system of the body to "get away from there"—a survival mechanism developed through evolution…

We are the first generation on earth to be exposed to toxic chemicals from the womb to the grave.
Rachel Carson – "Silent Spring", 1952

Other Physicians on the Subject

There is no doubt that some children with TS respond favorably to comprehensive environmental allergy treatment. Their classic allergic and TS symptoms subside and recur, simultaneously, in response to adverse exposures to certain foods, dusts, molds, pollens and chemicals. The symptoms of both environmental illness and TS can be repeatedly reproduced by proper provocation/neutralization allergy testing. Allergy and environmental illness are clearly part of the TS pie. While we don't yet know how large that piece is, it is unfortunate that many who evaluate this condition don't even consider this possibility.

Doris Rapp, M.D.
Past president American Academy of Environmental Medicine
Author of Is This Your Child?

I have made a large number of clinical and laboratory observations in a series of [25] TS cases that have clearly demonstrated the importance of allergic and allergy-like sensitivity to many dietary and environmental factors in this disorder. Treatment of these demonstrable sensitivities to foods, beverages, chemical agents, indoor and outdoor air pollutants, and airborne allergens (dust, pollens, molds, etc.) has been highly beneficial in many cases; symptoms have been reduced in frequency and intensity, and Haldol dosage has been decreased - even discontinued. Each child is a unique biologic and biochemical entity, and my findings will not apply to every case of TS. But, this is an extremely important area that requires immediate clinical application.

Marshall Mandell, M.D.
Excerpt from a letter to the TSA, February 1983

I recall John, a nine-year-old whose tic-like movements, peculiar noises, and obscene words disappeared while on an elimination diet. Then, when the offending foods were eaten again, symptoms recurred. Subsequently, I tested this boy and found him to be sensitive to inhalants. On inhalant vaccine and dietary elimination, his symptoms were well controlled… I phoned pioneer Chicago allergist Theron G. Randolph [1906-1995], and asked him about his experiences with TS. Here's what he told me:

I've seen at least fifteen patients with TS whose symptoms were related to environmental allergies. On a [medically supervised] fast, the tics of all these patients improved, and in many they disappeared. Then, when foods and chemicals were introduced, the tics and other symptoms returned. So, in my experience, many—and perhaps most—cases of TS are related to food and chemical sensitivities.

Working with children with TS isn't easy, and I don't claim to possess a "quick fix." Yet, I feel that many of these children can be helped—often dramatically—by searching for and appropriately treating food allergies, nutritional deficiencies, and yeast-related problems.

William Crook, M.D.
Excerpt from Solving the Puzzle of your Hard to Raise Child

TS is a neurological disorder characterized by a group of symptoms seen together in patterns that are given an overall umbrella label, but for which there is no one consistent, identifiable cause. Because TS has potentially devastating psychological and social consequences, and because of the limited success and potential toxicity of symptomatic drug treatments, each case deserves a thorough search for potential causes. Ideally, all physicians who assume responsibility for treating a patient with TS should be competent to conduct such a search.

Significant anecdotal experiences of physicians trained in the model of Environmental Medicine suggest that one fairly common and eminently treatable cause is often overlooked by other physicians. That cause is this: an individually specific and unique neuro-immune-endocrinologic maladaptation to environmental triggers to which the patient is susceptible.

As with any potentially complex case of Environmentally Triggered Illness (ETI), a case of TS caused by this category of mechanisms will be best identified by a comprehensive chronological history of all chronic or recurrent complaints, with a thorough search for the many dynamic patterns that suggest ETI as a contributing cause. These patterns must include those caused by organic inhalants, foods and chemicals, as well as gastrointestinal, endocrine, and other metabolic dysfunctions. Identified patterns can then be corroborated by appropriate in vitro and in vivo diagnostic procedures, and a customized regimen can be fashioned including avoidance, immunotherapy, and optimization of nutritional and metabolic functions. In-depth patient education and active patient participation is paramount to achieve a successful outcome.

Thorough training on how to conduct this type of evaluation can be obtained from the physician education programs of the American Academy of Environmental Medicine (AAEM). All courses are fully approved by the ACCME for continuing medical education for physicians.

It is imperative that physicians who manage patients with Tourette syndrome be trained to identify and treat this possible cause—or be ready to refer the patient to someone who can. It is an avoidable and potentially tragic disservice to the patient when such a cause—complex as it may be—is not adequately searched for and corrected. Where it is applicable, avoidance of incriminated foods, inhalants, and/or chemicals, along with immunotherapy and related treatment, is clearly preferable to a chronic course of potentially toxic symptomatic drugs.

Gary R. Oberg, M.D., F.F.A.P.; F.A.A.E.M.
Chairman, CME of American Academy of Environmental Medicine
Past president AAEM
Crystal Lake Center for Allergy and Environmental Medicine
31 North Virginia Street
Crystal Lake, IL 60014
Phone 815-455-1990, Fax 815-455-6780

This letter, received from a parent of a youngster with TS, is typical of a positive response to environmental medicine. It was addressed to the child's neurologist:

Dear Dr. W.M.,

I would like to let you know the exciting results of allergy desensitization and avoidance therapy on my son's Tourette Syndrome symptoms.

Terry, now 12, was diagnosed by you several months ago. At the time, his tics were limited to eye rolling, an eye wince, and mild vocalizations. Since then, his symptoms increased rapidly… he developed a one-sided neck jerk (20 to 30 times per minute on bad days); I observed trunk and extremity tics… for the first time. Vocalizations continued, but screaming also emerged (at home only). There were distressing mood swings including episodes where Terry appeared frustrated, tense, and out of control. Classic compulsive behavior (which I had previously tried to dismiss) was apparent. There were also infrequent but startling self-injurious behaviors. He is a good student, but he complained of eye fatigue. Upper back and neck muscles were tight and sore from the persistent jerking. Self-esteem was naturally affected, and comments from schoolmates increased. Terry played on a baseball team, but in the spring he complained that he felt so tired he could "hardly swing the bat."

I resolved to bring him back to you for an updated assessment and to discuss drug therapy. I knew he could not go back to school in this condition, and planned to contact you after our vacation in July. [I then learned of] Dr. Robbins of Boca Raton, Florida. Dr. Robbins is an osteopathic physician and certified in environmental medicine. He did a thorough history, particularly related to possible allergies… Terry did not appear to me to be an allergic child… However, provocative and RAST testing revealed allergies to several foods, dusts and molds. Dr. Robbins also suggested that Terry might be chemically sensitive. Recommendations included prescribed vitamins and nystatin, improved dust and mold control at home, and avoidance of suspect foods and household chemicals. He began receiving bi-weekly allergy shots for identified allergens, including foods.

There was an immediate improvement after the injections began. Tics were still present, but they were not as pervasive. To my surprise, there was also a striking observable new calmness to Terry's face. Over the next few weeks, a pattern became clear: He would start each day basically tic-free. (The exception to this is that for four years he has always had some eye rolling on awakening, and this was continuing.) Throughout the day, tics would sporadically develop, then gradually fade away over a 1 to 3 hour period. Previously, the tics were so profuse that I could not recognize any pattern. Now I was able to carefully observe the onset of tics under a variety of circumstances, and could determine a cause and effect relationship. I will admit to being relentless in this area, and it sometimes took considerable effort from Terry and myself to sort out the possible offending stimuli. But it was not long before the "mysterious waxing and waning of symptoms" described in the literature was, for Terry, quite explainable.

There were many foods which I had not requested allergy testing on, and over time we identified several additional allergens. Foods were the most difficult to control, as even small amounts of a substance could create tics. There were also situations where Terry was exhibiting no tics, and severe neck jerking suddenly began, yet food was not involved. These included stepping into an ant pile and receiving 18 fire ant bites, exposure to pesticide from a youngster playing with a can of Raid, and direct exposure to overhead mosquito spraying. Extended contact with chlorine or other swimming pool chemicals, and strong facial cleansers (such as Stridex), precipitated eye rolling. I soon saw that Dr. Robbins' diagnosis of chemical sensitivities was correct. There was a brief flare-up of symptoms during the first few days of school, presumably due to stress.

Symptoms continued to improve and… Terry could tolerate moderate amounts of foods which previously caused a reaction. Presently, four months after beginning treatment, I rarely see a tic of any kind, including early morning eye rolling. Food intake no longer needs to be monitored except to avoid excessive consumption of particular foods. Extended Nintendo playing can create a mild temporary eye roll, so playing time is limited. Mood swings, negative behaviors previously mentioned, and vocalizations are not a concern now. There are no complaints of fatigue though Terry continues to be active in sports. Self-esteem has returned, and we now celebrate a normal life. He remains on vitamin and injection therapy; moderate dust and mold control is exercised at home. I anticipate that occasional follow-up sessions with Dr. Robbins will be required to address the specifics of therapy as Terry's system adjusts.

I believe that families affected by Tourette Syndrome would appreciate knowing about this therapy. Even if I had heard that the odds for success were very small, I would have looked into it rather than helplessly watch the suffering my son went through. Of course, we won't know what the odds are until more people have an opportunity to try it… When I see the wide range of allergens he was reacting to, it is clear I could not have uncovered them myself. Dr. Robbins explained that a broad-based approach covering foods, inhalants, and chemicals, using combined neutralization injections and avoidance therapy, gives the best results.

As a school psychologist, I am accustomed to making behavioral observations. I can confidently state that this is not a case of unexplained spontaneous recovery. Counting tics as well as logging behavior, foods eaten, etc., became a habit. There was a gradual improvement since onset of therapy, and tics were clearly the result of observable stimuli. I am equally convinced that his recovery is not due to a placebo effect. Terry was initially negative about the treatment (due to my past unsuccessful efforts to find a remedy). Further, no youngster enjoys allergy testing, forced avoidance of favorite foods, and regular injections. It took about a month before he would even believe that he could actually be helped…

Dr. Robbins: I asked the parent for an update in August 1996…

It has been five years since therapy began. Terry was able to discontinue the injections after 3 years; nutritional supplementation was used for 4 years. He is strong and healthy, and has no problem with TS and related symptoms. He knows, however, that he can trigger an eye tic by eating foods he is sensitive to, particularly those with adverse chemicals. He is self-motivated to watch his diet and monitor other environmental factors. A couple of years ago he was started on a mild dose of Zoloft because he was prone to frustration. He recently weaned himself from that. At age 18, Terry needs no treatment or medication of any kind, and is enrolling in college. (By the way, Dr. M. never responded to my letter—and I've heard from parents that he continues to tell patients that diet and allergy have nothing to do with TS!)

The name of this family has been withheld at Terry's request.

Physicians interested in environmental medicine diagnostic treatment and techniques, or patients wanting to locate an environmental physician, please contact:

American Academy of Environmental Medicine
The American Financial Center
7701 E. Kellogg, Suite 625
Wichita, KS 67207
316-684-5500

For additional information on environmental medicine:

American Academy of Environmental Medicine (see above)

American Academy of Otolaryngic Allergy
8455 Colesville Road, Suite 745
Silver Springs, MD 20910

For the most current information on the application of environmental medicine to Tourette syndrome, join the Association for Comprehensive Neuro-Therapy and receive "Latitudes". For subscription information, please contact: Latitudes.