5/8/2014 3:06:00 PM Sufferers of tourette syndrome need our understanding
DEAR DOCTOR K: My grandson was recently diagnosed with Tourette syndrome. Could you explain what this is? What can I do to help him?
DEAR READER: Twenty years ago, I got into a cab at the hospital, heading for the airport. The driver was a man in his 30s who liked to talk. About every 30 seconds as he talked, he would clear his throat. It was not a gentle sound -- you could have heard it several hundred yards away. Also, every few minutes his head would suddenly jerk to the right side.
He asked me what I did, and I told him I was a doctor. He asked what kind of doctor, and I said I practiced internal medicine. He asked what that meant, and I replied that I took care of adults, made diagnoses and prescribed treatments but didn't do surgery. He asked: "Like what kind of diagnoses?" I replied: "Like, do you have Tourette syndrome?"
He jammed on the brakes, pulled the car to the side of the road and turned his head to look back at me. "Where were you when I needed you?" He then told me that as a child he had been placed in institutions for the "insane" because of his condition. It had taken him 20 years, and multiple doctors, before the diagnosis was made -- and before he was told he was not crazy, after all.
Tourette syndrome (TS) is a disorder of the nervous system that often begins in childhood. The major symptom is tics: sudden, brief, involuntary or semi-voluntary movements (motor tics) or sounds (vocal tics). For example, a child may blink his eyes, shrug his shoulders or grunt, bark, repeat words (sometimes foul words) or, like the cab driver, repeatedly clear his throat.
Tics usually begin around age 7. Motor tics usually come on first; vocal tics start later. Tic activity tends to peak from about age 8 to age 12. Understandably, children with TS often have feelings of embarrassment, low self-esteem and self-criticism.
Traditional psychotherapy and a different type of "talk therapy" called cognitive behavioral therapy can be effective. One technique is called habit-reversal training. The therapist teaches the person to use a specific muscle movement or behavior to compete with the tic. Other techniques are positive reinforcement, relaxation training and self-monitoring.
Various medications can help reduce (if not eliminate) the unusual symptoms. Doctors generally first prescribe drugs with fewer side effects. Examples include a blood pressure-lowering drug, an anti-anxiety drug and an anti-seizure medication. If these drugs are not effective enough, antipsychotic drugs (even though TS is not a psychosis) may help, but may have more side effects.
Researchers are testing a treatment known as deep brain stimulation (DBS) for severe cases that don't respond to other treatments. DBS involves surgery to place small electrodes into brain areas thought to be involved in generating TS tics.
You can help your grandson by offering your unconditional love and support. Reassure him that tics often decrease in severity through the teen years. They may even disappear by his early 20s.
(Dr. Komaroff is a physician and professor at Harvard Medical School. To send questions, go to AskDoctorK.com, or write: Ask Doctor K, 10 Shattuck St., Second Floor, Boston, MA 02115.)