2019 Guidelines for Treating Tourette’s and Tics: A Failure and a Farce

After several years, a new set of medical guidelines for treating Tourette’s and chronic tic disorders was released. It fails miserably in meeting the needs of patients.

The document, published in the leading medical journal Neurology, does little to move the prevention and treatment of these disorders forward.

New treatment areas of promise are blatantly ignored in the 2019 guidelines, and the development of useful new directions is stalled.

To date, conventional medicine has not offered patients and families an explanation of why tics occur, or how to reduce them without strong drugs or complex behavioral training. (Or, when all standard approaches fail, implanting electrodes in the brain.)  I had hoped that new guidelines would open new avenues. But it is just more of the same.

“Tourette syndrome is a genetic problem and there is no cure,” is the standard line. Chronic tics? Well, the docs tell us they might go away on their own. Or then again. . . they might not. If symptoms get a lot worse there’s always medications that most people want to avoid due to side effects.

Patients and families leave doctors’ offices with few answers.

Based on the 2019 guidelines, we should not expect that approach to change any time soon, and that is the key failure of this new effort.

A summary of the new guidelines

These guidelines were published in the May 2019 issue of the popular medical journal Neurology and published online (as of this writing): See here.

According to report, the American Academy of Neurology,  convened a group of nine physicians, two psychologists, and two “patient representatives” to develop new practice recommendations for treating chronic tics and Tourette syndrome. The committee is responsible for advising on approaches that will affect millions of people worldwide.

Forty-six recommendations were made by this group on how to assess and manage Tourette’s and chronic tics.

I was eager to see the advice and then very disappointed to realize it was largely the same old protocols as before.

Grouped together the 46 suggestions include:

• Counseling recommendations on the natural history of tic disorders;
• Psycho-education for teachers and peers;
• Assessment for psychiatric comorbid disorders (in other words, does a patient have a condition like attention deficit hyperactivity disorder [ADHD] or obsesssive-compulsive disorder [OCD] along with the tics;
• Periodic reassessment of the need for ongoing therapy;

Treatment options are

• “Watchful waiting”
• Behavioral therapies (i.e., CBIT)
• Medications;
• Deep brain stimulation

What’s missing:  Doctors will  be seeking  guidance from this Neurology article to learn how to handle cases of Tourette’s and chronic tics in their offices. Yet, there is no advice on how to explore what may actually be causing the tics.

If someone has a recurring stomachache, it is assumed a physician will try to figure out why. If the patient has a pain in the chest, there is the same goal, to determine a cause. If someone has breathing problems, a clinician strives to find out why. But if a patient has tics? No effort is made to understand why–because doctors follow guidelines that do not include that step. 

Readers who are unfamiliar with how tic disorders are typically viewed by physicians might be surprised to learn that the health status of the patient is rarely considered when treating tics. Nor is the person’s prior or current environment, diet, or lifestyle considered during an office visit, a common medical practice.

Instead, a simple checklist is used to decide what category of tics might be present so a diagnostic label can be given. Goal accomplished! But while a label may satisfy the doctor and the insurance company, it does not satisfy the patient.

People are looking for real answers. They want to know why they have the tics and what they can do to reduce them.  And, they want to know specifically why tics flare at some times and subside at others.

Our organization, Association for Comprehensive NeuroTherapy (ACN), has collected information on these conditions for more than 25 years.

We have learned that doctors and patients who have successfully reduced or eliminated symptoms of Tourette’s and other tic disorders have often done so by exploring the issues below and addressing them when needed.  (We offer a comprehensive overview of Tourette syndrome here.)

A partial list of issues that can impact the nervous system and are ignored in the 2019 Guidelines

• Environmental factors
• Viral, bacterial, fungal, parasitic, and other infections
• Allergies: Pollens, mold, ragweed, insect, dust mite, foods and more
• Food intolerance and sensitivity beyond classic allergy; reaction to food additives
• Nutritional and mineral imbalances
• Toxic chemical exposures and overloads

None of the recommendations in the 2019 guidelines consider possible causes of tics. These factors above have been reported by doctors and the tic community for decades!

Repeated calls for research in these areas go unheeded, while the medical community is only familiar with the status quo. And patients suffer.

Doctors and patients need to be educated on triggers for tics

There have been thousands of reports of people experiencing one or more “triggers” for tic symptoms. The first report came more than 40 years ago. (Read a physician’s report of his daughter’s triggers in this article from the early 1980s)

Our organization has found through survey responses and case reports that triggers fall into eight main categories. When personal triggers are identified and avoided, symptoms are often reduced or eliminated completely.

Types of triggers as categorized by ACN/Latitudes.org:

1. Sensory influences
2. Allergens
3. Food/Drink
4. Toxins
5. Medications
6. Lifestyle
7. Physical imbalances
8. Weather

For more information on tic triggers see Stop Your Tics by Learning What Triggers Them.

The missed opportunity: The role of the environment

The 2019 guidelines could have encouraged physicians to explore lifestyle, environmental issues, allergens, gastrointestinal, immune, and dietary factors–consulting with others outside their field as needed. They could have promoted a more comprehensive approach to dealing with Tourette syndrome and chronic tics, one that would lead to new answers and actually help heal people.

They could have suggested that when neurologists can’t help a patient they should refer out to practitioners in other fields who can explore medical issues that may be playing a role.

But rather than expand the understanding of  what causes these conditions, they simply call for more of the same types of focus:

1) talk-therapy;
2) different types of drugs;
3) behavior therapies, and
4) deep brain stimulation (electrodes implanted in the brain).

The 2019 guidelines disappoint in their utter failure to encourage clinicians to look for the cause of tic symptoms–a basic principle of medicine. They should have offered new insights but do not.

The new guidelines are harmful and a farce

When compared to the current conventional approach to tics—which is widely acknowledged in surveys of the tic community as unsatisfactory—little of substance has changed with the new recommendations.

How do the 2019 guidelines differ from the previous set? The changes are summarized here.

 

• In the past, patients dealing with tics that were not considered life-altering were told by doctors to simply go home and see if symptoms improved on their own. That advice will now be referred to as “watchful waiting.”
• Behavioral therapies, which aim to train patients to alter the way their tics are expressed, is now suggested as the first line of treatment.
• Additional attention is placed on counseling and outreach education.
• Emphasis is given to discussing the harm that medications can cause while weighing possible benefits.

Here’s why these guidelines are inadequate and harmful

• Clinicians assessing tics will continue to rely on simplistic checklists rather than medical evaluations The guidelines fail to encourage practitioners to assess possible factors that could be contributing the the tics. This could require consultation with experts in other medical fields.
• The team lacks knowledge and experience in key areas  This document was developed by a team that is apparently ignorant of the potential role of diet, nutritional and metabolic status, allergens, toxins, the gut-brain connection, infections, and the immune system in nervous system functioning. As such, they have ignored these critical areas that have proven important in many health conditions and hold promise for the understanding and treatment of Tourette syndrome and other tic disorders.
• Mention of symptom triggers is completely lacking  Symptom triggers are not a new concept and have been widely reported for tics for decades. A few possible triggers in migraine, for example, are fragrances, flashing lights, aged cheese, and MSG (monosodium glutamate), among many others.  Similar patient-specific triggers exist for Tourette’s and tics but are never discussed by leading advocate groups nor these guidelines. The Neurology article does not even use the “triggers.” This team appears content to leave patients and families in the dark on possible ways to improve health and reduce suffering through the identification and elimination of tic triggers.

Tics are not considered in a holistic manner in these new guidelines. Rather, they are apparently viewed as an independent, mysterious phenomenon–much as medicine looked at health issues 100 years ago. This document reinforces that antiquated approach.

In a nutshell: This one sentence tells the sad story

The 2019 guidelines contain more than 5,200 words. Only one sentence focuses on future directions that could truly be helpful in providing safer and better approaches to tics.

That sentence is: “Future research on the effect of special diets, nutritional supplements, and exercise on tic severity is needed.”   This is the closing statement to the whole report, as if an obligatory afterthought.

And those words omit recommending the study of the role of the immune system, infection, allergy, toxins, and the environment in tics–a blatant oversight. Each of these areas has been linked to tics in published journal research. 

In fact, the entire role of the environment in Tourette’s is ignored, even though it is widely recognized as playing an important role in this condition. This disqualifies this document as being unbiased and relevant.

What, then, does this advisory team consider the most important focus for future research?

Unfortunately, more of the same! Behavioral therapies; plenty of medications: first-generation antipsychotic fluphenazine; selective D1 antagonist ecopipam; dopamine depleters, tetrabenazine, deutetrabenazine, and valbenazine, cannabis and Chinese medicines; deep brain stimulation. Relatively new to the table is cannabis and Chinese medicine.

What is urgently needed for progress? A more inclusive expert multidisciplinary team

A collaborative team of practitioners that includes international leaders from fields of allergy, immune function, laboratory testing, nutrition, chemical sensitivity, and environmental medicine (among others) needs to be consulted when developing the best approaches to chronic tics and Tourette’s.

The very brightest and best should be sought out to change the currently stunted direction of research on tics. New, fresh protocols are desperately needed.

Of course, this would mean that mainstream psychiatrists, psychologists, behavioral therapists, and related practitioners would have to admit that finding answers for tics and Tourette’s requires more than their limited area of practice can offer.

Until the required change in leadership takes place, ACN Latitudes.org will continue to provide the tic community and practitioners with innovations in treating these conditions through our books and this website.

Research Articles on Tourette Syndrome

Sheila Rogers DeMare