Tourette Syndrome Tourette Syndrome
Centers for Disease Control and Prevention
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Tourette Syndrome Awareness month is May 15-June 15. Learn about a new treatment option and find out what CDC is doing to raise awareness and educate health and education professionals about Tourette Syndrome.
Tourette Syndrome (TS) is a disorder that affects the nervous system (brain, spinal cord, and nerves). TS causes people to have "tics." Tics are sudden twitches, movements, or sounds that people do repeatedly. People who have tics cannot stop their body from doing these things. For example, a person might keep blinking over and over again. Or, a person might make a grunting sound without meaning to. Tourette Syndrome is often associated with at least one additional diagnosed condition such as Attention Deficit/Hyperactivity Disorder (ADHD) or Obsessive Compulsive Disorder.
Until recently, medication has been the only real treatment option for children and adults with TS. Medication can help control tics, but it doesn’t always work. It can also cause side effects that make people feel bad and can lead to other health problems. Researchers working with the Tourette Syndrome Association began developing and testing a promising new treatment option1, 2 that does not use medication, called Comprehensive Behavioral Intervention for Tics, or CBIT (pronounced see-bit).
CBIT is a type of behavioral therapy that was developed for people with tics. Behavioral therapy teaches a person to become aware of their behavior and helps them change what they do in a very careful and systematic way. It is carefully planned depending on each person’s specific needs and symptoms, and typically takes place in a therapist’s office. Usually the treatment involves 8 sessions of about one hour taking place over 10 weeks, but can be longer or shorter.
People with tics usually have an urge that is relieved when they have the tic—like scratching an itch. During CBIT, the therapist helps individuals with tics learn to become more aware of the tics and the urge to tic. Once a person is more aware of their tics and urges, they learn how to perform a different behavior instead of the tic. The new behavior (competing response) needs to be something that makes it difficult to perform the tic. For example, a child with a frequent throat clearing tic could be taught to engage in slow rhythmic breathing whenever he or she felt the urge to clear his or her throat. In order for this to work, the new behavior has to be carefully chosen and practiced over and over. This "new behavior" helps reduce and, in some cases, even eliminate the tic.
Tics can also be brought on or made worse by stressful situations or how other people react to the person with a tic. An important part of the CBIT treatment is for the person with the tic and their families to learn how to identify these situations and try to change them so the tics aren’t made worse. For example, someone whose tics get worse when doing homework or before a presentation at work would learn how to manage their stress before and during these situations; they may take a walk, listen to calming music, or do some breathing exercises before they begin their homework or presentation.
What CBIT tells us about tics
When this behavioral treatment was first developed, health professionals were concerned that it could cause more misunderstandings about tics. Just because tics can be managed by changing behavior doesn’t mean that tics are done by choice.
Dr. Doug Woods, a clinical psychologist from Texas A&M University and one of the leading experts in CBIT says, in many ways, behavior therapy for tics is like rehabilitation after a stroke. "No one would argue that a stroke is a neurological problem. If you know someone who has had a stroke, have you noticed that they can do more things now than they could right after they had the stroke? Maybe they can walk better, talk better, eat better, or do other things better. Now did the person with the stroke just have to sit and wait for those things to come back? Of course not, they had to learn to do those things again. Similarly, if people with TS learn new skills, they can overcome many of the problems caused by their neurological disorder."
How effective is CBIT?
"It’s the first therapy I try," says Dr. Leon Dure, a pediatric neurologist from the University of Alabama at Birmingham. "It has been very effective." And the evidence shows that it works for many. Linda Rowland, mother of Lucas, 15, who has TS, shares her experience: "Over 4 years we tried medication, which was a negative experience, and diets, and neuro-feedback, with no lasting improvement. Two days after Lucas started CBIT the first tic was gone. Now he is basically tic-free for the first time since third grade. If we had CBIT 4 years ago, it would have made the past 4 years so much better. One thing I really like about CBIT is that Lucas is learning how to address tics, so if new ones come up, he’ll be able to manage them on his own."
Two large scale studies of children1 and adults2 with TS showed that CBIT is a safe and effective treatment. Over half of the children who were treated with CBIT had significantly less severe tics, and were better able to function. Adults who received the treatment also had less severe tics – 38% were much improved or very improved. But these studies also show that CBIT does not help everybody. CBIT is not a "cure" for TS; rather, CBIT is a tool that when used appropriately can help people with TS manage their tics better and reduce the impact that tics may have on their lives. More information is needed to find out when it works best, and for whom.