On Nov. 1, 2010, Stephanie Rosen* noticed something amiss with her daughter, Jill.* The 12-year-old had started shaking her head rapidly, as though she were emphatically saying no to something. Rosen thought the sudden movement was the result of a Halloween sugar spike, but the motor tic persisted over the next year, popping up intermittently for a week or two and then disappearing. By August 2011, Jill had developed a vocal tic, as well. What first sounded like she was rapidly sucking in air evolved into Jill's emitting a noise from her throat similar to a squeak — sometimes a dozen times a minute.
That fall, Jill was diagnosed with Tourette syndrome. A straight-A student at an all-girls school in northern New Jersey, Jill soldiered through her classes despite her occasional head shaking. But when the squeaking started, Rosen says, "It made her feel a lot worse because she thought she was getting on other people's nerves."
Tourette syndrome is a neurological disruption that mostly affects school-age children. It is characterized by short, sudden physical movements as well as vocal outbursts. These symptoms usually abate over time, becoming less frequent after a child goes through puberty. The disorder affects three to eight out of every 1,000 children, according to the Centers for Disease Control and Prevention (CDC).
In early April, sitting in the Manhattan office of Shannon Bennett, PhD, co-director of the Pediatric OCD, Anxiety, and Tic Disorders Program at Weill Cornell Medical College, Jill looks like a symptom-free 13-year-old girl.
"No one really notices my tics anymore because they're gone," Jill says. She's wearing her school uniform — pink polo shirt, khaki skirt and green jacket — and sitting on a yellow couch. "It's nice not to have to worry about it," she says while tugging at her ponytail.
Jill is one of a growing number of children who have benefited from comprehensive behavioral intervention for tics, or CBIT. The treatment, which was developed over the last decade or so, trains children to manage their tics while identifying and neutralizing the stressors that can exacerbate them. CBIT essentially adds an environmental component to habit-reversal therapy, which has been used to control behaviors, such as nail biting and thumb sucking, for roughly 40 years. The therapy has shown promising results both in clinical trials and in practice, but it's not widely available outside of a few major urban areas.
That, however, may soon be changing as the Tourette Syndrome Association and the CDC are beginning to train and educate clinicians and other licensed health-care professionals to administer the treatment. They hold three or more workshops a year, consisting of two days of training and several consultation calls with trainers over the following three months. Clinicians completing all of the follow-up calls are added to a CBIT therapist referral list kept by the TSA and made available for parents seeking treatment for their children.
A tic usually occurs in response to a spontaneous urge that a person finds uncomfortable or distressing. Executing the tic behavior provides a feeling of relief from the sensation. CBIT therapy focuses on habit reversal — helping clients recognize the urge to tic and respond with a less disruptive behavior that interferes with or distracts from carrying out the tic. In Jill's case, when she felt the compulsion to tic, she would hold her fingers to her temples, as if she were deep in thought, instead of shaking her head. She'd also take long deep breaths in lieu of squeaking.
"Maybe for the first week or two it was pretty hard to remember to do the competing response," says Jill. "But then you think about it in the back of your head, ‘OK, do your CR.'" She reports noticing fewer tics within a week of beginning CBIT treatment with Bennett. After a month of weekly sessions and practice, her tics became barely noticeable.
Therapy wasn't limited to Jill. Her parents and other influential people in her life needed training, as well. "Sometimes parental anxiety about and attention to a child's tics makes the child more anxious and more likely to tic," Bennett says. She taught Jill's parents to ignore their daughter's tics and offer encouragement when she used her competing response, such as giving her a high five when they noticed her doing her deep breaths. Bennett gave Jill's parents handouts explaining the reasons for ignoring the tics themselves, which they shared with the nurse at Jill's school, her teachers and even her grandparents, aunts and uncles. "Anyone who we thought might comment on Jill's tics was notified about the importance of changing that behavior," says Rosen.
Medication vs. therapy
Jill's recovery has been accomplished almost entirely without the use of medication, which is still the standard of care for Tourette syndrome nationwide. In addition to therapy, Jill took the lowest dose of the blood pressure medication Tenex, which is commonly prescribed for tics, for two months before tapering off. "Medication was something we tried to avoid," says Jill's father. "We really weren't keen on having her medicated for the foreseeable future."
Currently, antipsychotic drugs and alpha-agonists are the most common treatment for the disorder. "I would guess that for 95 percent of people with tics, right now the treatment is medication," says John Piacentini, PhD, a professor of psychology at the University of California, Los Angeles, and a co-developer of CBIT. Medications can control tics, but they often have side effects, including weight gain and disrupted cognitive and motor skills. Because of these risks, parents are very interested in behavioral alternatives, he says.
New research is boasting the success of behavioral interventions. A study Piacentini co-authored in the Journal of the American Medical Association in 2010 found that children and adolescents who completed a 10-week course of CBIT showed a decrease in tic severity that was only slightly less than that associated with antipsychotics. Nearly 90 percent of the children who responded to the CBIT sessions were still exhibiting reduced symptoms six months after the therapy ended, whereas when children go off their medication, it is typical for symptoms to return. Likewise, if children stop practicing competing responses, their symptoms will likely re-emerge. And unlike medication, the behavioral intervention had no adverse side effects. In fact, in many cases, says Piacentini, CBIT can have positive effects, such as boosts to self-esteem.
Still, no treatment is 100 percent effective. "Not everyone who has tried it has received the kind of benefit that they were hoping they would receive," says Kevin St. P. McNaught, PhD, vice president of Medical and Scientific Programs at the national Tourette Syndrome Association. "In that respect, more research will help determine who will be more likely to benefit and how to increase the number of positive responses."
Even CBIT's proponents agree that the therapy isn't for everyone — especially children with more disruptive co-occurring problems. Eighty percent of people with Tourette syndrome also have behavioral issues, such as attention-deficit hyperactivity disorder (ADHD), obsessive-compulsive disorder (OCD) and other anxiety disorders, according to the CDC.
"I think CBIT works best for kids and families who are motivated to practice new strategies for responding to the tics, and for kids who don't have a lot of complicating co-morbidities," says Piacentini. In particular, children with ADHD may have more difficulty succeeding at cognitive-behavioral therapy because they need to be able to pay attention to their anticipatory urges to employ their competing responses.
When children begin CBIT, clinicians determine which of the child's symptoms are the most disruptive and address those first. "The tics sometimes are at the bottom or far down the list," says Piacentini, adding that in cases where, for instance, ADHD may be severe, he will refer a patient to have that condition treated first before starting CBIT. "Parents often think that CBIT is going to fix all these problems, and it's not." (While CBIT may not improve a child's co-occurring conditions, it doesn't exacerbate problems such as anxiety, disruptive behavior and attention deficits, according to a 2011 study published in the Journal of Child Neurology. Medication, in contrast, can cause these conditions to worsen.)
To treat co-occurring problems, CBIT therapists often employ other methods of cognitive-behavioral therapy. Jill, for example, felt overwhelming anxiety in elevators or when passing through tunnels in a car. She also showed signs of OCD. "If I was getting a Snapple bottle or something at lunch, I'd always have to take the third one," Jill says. "I had a weird obsession about it, like something was going to go wrong if I took the first or the second one."
Drawing on exposure therapy research, Bennett had Jill ride in an elevator while employing her deep breathing and after discussing the very low probability that the car would plummet down the shaft, as Jill feared. To address her OCD symptoms, Bennett took Jill to a grocery store and had her pick the first bottles from a beverage cooler. These interventions allowed Jill to gain mastery over these fears. Asked how she feels about elevators today, Jill says, "They're pretty easy to ride in."
Piacentini says that, after 50 years of having to rely solely on medication, CBIT gives children and their families an active role in the treatment of Tourette syndrome. When the treatment works, it not only empowers the child to manage his or her tics, but boosts his or her self-esteem. If the child experienced anxiety and social issues related to the tics, then as the tics get better, these other areas improve, as well.
Jill's mom says that was absolutely the case with her daughter. "Jill has come out of all this as a less anxious kid overall," Rosen says. "She's a totally different person."
* Names have been changed.
Nikhil Swaminathan is a writer in Brooklyn, N.Y.