There are lots of misconceptions about Tourette Syndrome. This is what experts know about how they affect children and what can be done to help.
Hundreds of times a day, 7-year-old Alex blinks his eyes rapidly while also making a protruding motion with his lips, like he's kissing. He also frequently clears his throat. He can't control the movements and often doesn't even realize they're happening.
Alex has Tourette Syndrome, a neurological condition characterized by two different types of tics (motor as well as vocal) that have lasted more than a year without a three-month tic-free period. About 2 out of 1,000 children in America have Tourette, which typically starts between the ages of 3 and 9. Everyone who has Tourette had their first tics before the age of 18.
SIGNS & SYMPTOMS
There are two different types of tics experienced by people with Tourette: simple and complex.
- Simple tics involve one muscle group. Someone with Tourette typically experiences a tic first on the face (for example, eye blinking, nose scrunching, or lip protruding) and then may have tics involving other parts of the body (shoulder twitching, kicking, head rolling). Simple vocal tics include grunts, squeals, and coughs.
- Complex tics involve more than one motor group. "They're a series of tics, such as an eye blink followed by a shoulder tic or a series of coughs or squeaks," says Jerry Bubrick, Ph.D., a psychologist who is the senior director of the Child Mind Institute's Anxiety & Mood Disorders Center in New York City.
Although many people associate Tourette with shouting profanities uncontrollably, less than 2 percent of people with Tourette experience that type of tic. In fact, there is no "typical" case of Tourette -- it can include any combination of tics, they can range from mild to severe, and they may change over time.
Many children with Tourette have "premonitory urges" before the tic comes on. "It's like that sensation you get in your nose right before you sneeze, and the only way to get rid of it is to sneeze," says Dr. Bubrick. "Kids have a similar sensation at the location where the tic occurs, and the tic is the only thing that alleviates it." Although most children can't control their tics, some kids are able to hide them until they get to a private place. Kids will develop their own strategies to control their symptoms at school, for example, but then explode when they get home.
Nearly 5 to 24 percent of school-aged children have tics that do not turn out to be Tourette. These are called "transient tics" and typically last at least four months, but no longer than one year. How can parents tell the difference between a common developmental stage and Tourette? "Look for how frequent the tic is, how intense it is, and how much it interferes with the child's life," advises Dr. Bubrick. "In the case of a child who has eye blinking only when she's tired and it doesn't interfere with her home or school life and disappears after two weeks, that's nothing to worry about. If it becomes more pervasive and it starts to bother her or she starts getting teased, that's more of a concern."
Tourette is a neurological condition that occurs due to a dysfunction in an area of the brain called the basal ganglia, which controls motor function. Some researchers say that up to 85 percent of cases have a genetic component; the other 15 percent of cases are believed to result from such factors as pregnancy complications, head trauma, and carbon monoxide poisoning. Males are three to four times more likely than females to have the disorder.
Stress doesn't cause Tourette but can exacerbate symptoms. For many children, their tics increase in frequency and severity when they're stressed, bored, or tired. Engaging in activities, whether sports or computer games, can help decrease the severity.
There is also a strong correlation between Tourette and OCD. "Kids who have Tourette often have OCD, but not the other way around," says Dr. Bubrick. It's also common for children with Tourette to have attention deficit-hyperactivity disorder (ADHD).
Tourette is usually treated by a psychiatrist or physician working with the child and his parents. There are three phases of treatment:
1. Awareness training. "First we have kids and parents make a log so they can become more aware of the tics -- when they occur, what else is happening at the time, how long they lasted, and whether the child could suppress them," says Dr. Bubrick.
During this phase, the child is also made aware of what the tics look like to an outsider. "Children may know they're doing the tics, but they don't understand what other people see." So kids sit in front of a mirror and watch while the tics are occurring -- an experience Dr. Bubrick says is not uncomfortable for them: "The idea is just to have them see what they're experiencing."
2. Relaxation training. Tics are less likely to occur when the body is relaxed, so during this phase kids learn techniques to reduce stress and tension.
Two exercises kids are commonly taught: deep breathing and progressive muscle relaxation. "For older kids, we usually audiotape the exercises and put them on their phones so they can listen to and follow them anytime," says Dr. Bubrick. Each session takes 20 to 25 minutes, and he recommends that kids do the exercises once or twice a day.
"If they practice regularly and frequently, they start to be able to relax on their own without the recording," he says. "Then, when they notice that their body is tense, they can use the strategies to calm down on their own." This decreases their symptoms.
3. Finding a competing response. After kids know when their tics happen and how to calm their body down, they learn what to do instead of the tic. "We want them to use the same muscles in opposite motions until the urge passes," says Dr. Bubrick. Take eye blinking, for example: During the blink, the eyelids come down; the opposite of that is to keep the eyes wide open. "When the premonitory urge hits, we teach kids to use their breathing strategy and open their eyes as wide as possible for another minute," he says.
In other words, "we are teaching the brain to trick the tic," says Dr. Bubrick. That isn't easy, and it takes a lot of patience and a lot of practice. But the reward is fewer tics and greater social acceptability. Treatment usually lasts for 10 to 15 weekly sessions, and after that the child has tools he can use to better control his tics.
That's what happened for Alex. "He really took to the relaxation training and was diligent about practicing," reports Dr. Bubrick, "and after eight sessions his tics were barely noticeable."
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