New guidelines meant to help neurologists treat people with Tourette syndrome call for waiting to see whether symptoms get worse and then trying behavioral therapy before resorting to medications.
The guidelines were released Monday in Neurology, the medical journal of the American Academy of Neurology (AAN). The AAN’s annual meeting has brought 14,000 people this week to the Convention Center. The group held a news conference Monday to discuss the guidelines, the first for American neurologists.
Tourette is a neurodevelopmental disorder characterized by tics: repetitive movements and vocalizations that stem from involuntary urges. It starts in childhood and is three to four times more common in boys than girls.
Treatment for Tourette and other chronic tic disorders can reduce the tics, but rarely eliminates them, said Tamara Pringsheim, a neurologist at the University of Calgary who was lead author of the new guideline. The good news, though, is that the syndrome often gets better on its own. The tics usually begin at age 5 or 6 and peak at age 10 to 12. Many children improve in their teens. About a quarter will continue to have moderate to severe tics over time, she said.
Pringsheim said the most important message of the guidelines is that doctors, who are accustomed to prescribing medications, should first recommend Comprehensive Behavioral Intervention for Tics (CBIT), a treatment that helps people with tics respond differently to their urges and also helps them cope with anxiety, which can increase symptoms.
For people who are not impaired by their symptoms, it is acceptable to provide information about the condition and wait to see how symptoms progress.
When patients don't respond to behavioral therapy, the guidelines say doctors can consider medications called alpha-2 adrenergic agonists, antipsychotics, topiramate and botulinum toxin. Doctors may often be able to prescribe one drug that will help not only the tics but other psychiatric conditions that are common in people with Tourette syndrome: attention deficit hyperactivity disorder, obsessive-compulsive disorder and mood and anxiety disorders. Deep brain stimulation is an option for people who have not been helped by behavioral therapy or medication.
John Piacentini, a professor of psychiatry and biobehavioral sciences in the David Geffen School of Medicine at UCLA, was part of a group of psychologists and psychiatrists who developed CBIT in 2000. They brought together “habit-reversal” training and an approach designed to reduce anxiety.
People with Tourette typically feel a strong urge to tic and then feel better after they do. One goal is to prevent that reward by teaching people to recognize the urge and respond in a way that prevents the tic. A breathing technique might stop a vocal tic. Grabbing your wrist stops an involuntary arm movement.
Because many people with Tourette say they feel more urges to tic when they’re stressed or anxious, the other part of the treatment seeks to lower their stress and change their responses to it.
Patients typically get eight to 12 weeks of treatment, Piacentini said.
One problem is that there are not enough people trained to provide CBIT, particularly in rural areas. “There are a lot of areas of the country that just don’t have easy access to these therapists,” he said.