The Trials of Living With Tourette Syndrome

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Where Do the Tics Come From?

Most of Tourette syndrome is inherited. Tics occur along a spectrum, so mom or dad might have mild tics that went unrecognized. Researchers worldwide have been studying families to pinpoint what they suspect are multiple genes responsible for the disorder, and then identify environmental factors that cause only some people to express Tourette syndrome.

There have been published and controversial suggestions that Tourette may be partly rooted in infections with Streptococcus bacteria, which trigger immune system changes, according to a review study led by Dr. James Leckman, from the Yale Child Study Center in New Haven, Conn. It was published in a special August issue of the Journal of Child and Adolescent Psychopharmacology devoted to Tourette and obsessive-compulsive disorder.

What Can Be Done?

Medications: In many cases, Tourette occurs in tandem with two other neurological conditions, obsessive-compulsive disorder and attention deficit hyperactivity disorder. Some doctors prescribe antidepressants for OCD, and drugs like Adderall or Ritalin for ADHD. Only limited medications seem to ease the tics, among them, the blood pressure drug clonidine (Catapres), and the antipsychotics pimozide (Orap) and haloperidol (Haldol), both of which have side effects such as weight gain, sedation, tremor and jerky movements called tardive dyskinesia.

One of the novel antipsychotics, aripiprazole (Abilify), has been shown to suppress tics and control behavioral symptoms in a two-month study reviewed in the special theme issue of the Journal of Child and Adolescent Psychopharmacology. Even nicotine gum has yielded improvement, but it "lasted no longer than 1 hour after chewing," according to an overview of Tourette and tic treatments in the same issue.

Behavioral therapy: Many families have tried behavioral therapy, which teaches Tourette sufferers to manage their tics, or suppress them temporarily to function better at school or work. This can be done with a technique called habit reversal, which substitutes another behavior that competes with the tic, such as rhythmic breathing or deliberately lengthening muscles contracted during repeated shrugging.

Self-hypnosis: In July, Dr. Jeffrey E. Lazarus of Palo Alto, Calif., published an article in the Journal of Developmental & Behavioral Pediatrics, describing 33 children and teens he instructed in self-hypnosis to manage tics. Although he reported that the majority were able to get some control over their tics, his data didn't demonstrate long-term results, nor has self-hypnosis been subjected to a randomized, double-blind clinical trial. Nevertheless, parents may be drawn to it because it is non-invasive and doesn't involve medication.

Psychotherapy: Therapy can help sufferers deal with the social and emotional ramifications of suffering from a stigmatized disorder.

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