It's Nobody's Fault (29 page)

The neuroleptics work, but the side effects associated with them are often troublesome, so the first-line drugs for TS are the antihypertensives, especially Catapres. After a 12-week trial of Catapres most children with tics are 60 percent improved and experience limited, harmless side effects
—mostly drowsiness (usually only during the early stages of treatment) and dry mouth. The Catapres doesn’t interfere with learning or general functions. Another antihypertensive that is prescribed for TS is Tenex. Klonopin, an antianxiety agent, has also been effective in suppressing tics in some kids with TS.

The
neuroleptics
, most notably Haldol, Orap, and Prolixin, are better than Catapres at getting rid of tics—studies have shown 70 to 80 percent improvement in kids—but the side effects can be numerous and unpleasant: drowsiness, weight gain, decreased concentration, and sometimes impaired memory. Long-term use of neuroleptics may lead to tardive dyskinesia—involuntary muscle movement—in adults, but this effect of the neuroleptics on children has not been documented. I prescribe neuroleptics only when tics are causing great distress and dysfunction.

Many children diagnosed with TS also are being treated for ADHD and OCD. Attention deficit hyperactivity disorder usually calls for a psychostimulant, such as Ritalin; and OCD is ordinarily treated with an antidepressant, such as Anafranil or Prozac. All these medications have possible nuisance side effects. Anafranil may cause dry mouth, drowsiness, low blood pressure, dizziness, and constipation. Prozac may cause sleepiness or lack of inhibition. Ritalin may cause tics to increase. Because of all these variables, the child’s treatment package here must be monitored especially carefully.

It is estimated that 20 to 30 percent of all children with TS outgrow the disorder naturally in their teens or early twenties. I know of a couple of cases in which the tics just disappeared, as if by magic. One of those children has been tic-free for more than five years now. However, it would be a grave mistake for any parent to count on or even hope for a spontaneous remission. The treatment for Tourette syndrome is not ideal, but it is essential. There are risks attached to the medication, but leaving TS untreated poses a much greater risk to a child’s health and well-being.

TS can be a very debilitating disorder, hard on the body as well as the mind. I’ve never seen a 14-year-old look as tired as Wendy. She came in with a severe blinking problem. It started when she was seven years old, but it’s gotten a lot worse lately, so bad, in fact, that it’s interfering with her ability to study. A straight-A student since first grade, she was having trouble academically. As I talked to Wendy about her problem, I discovered that blinking was just the tip of the iceberg. Many other tics were
filling her day. She’s been barking, shrugging her shoulders, and twisting her upper body, sometimes hundreds of times a day. Embarrassed and ashamed about her tics, she’s been avoiding school; that is why her grades have dropped. These tics take a tremendous amount of concentration and energy. As anyone who saw the dark circles under this teenager’s eyes could easily tell, Wendy was exhausted.

Children with TS who don’t receive prompt treatment will suffer in other ways too. They’ll probably be alienated by their peer group and find it difficult to function socially. TS will affect their ability to date, to marry, to go out and get a job. Not surprisingly, a tic disorder can have a devastating effect on a child’s self-esteem. Left untreated, it may contribute to depression. The worst case I’ve come across was an 18-year-old boy who, I learned, had untreated tics since he was in the first grade. By the time I saw him, he was demoralized, hopeless, even suicidal. “I’m not living. I’m just surviving,” he said in desperation. “Wouldn’t it be great not to be alive at all? Then I wouldn’t have to worry about doing all these crazy things anymore.”

Tourette syndrome cannot be cured, true, but it can and must be brought under control with medication. With the right treatment children and adolescents with TS can lead well-rounded, productive, happy lives. Some of them even make it to the major leagues.

“We have three children, but one of them, Bradley, takes up 90 percent of our time. Brad runs all our lives. The family can’t function because we have to concentrate on making sure he’s all right all the time. When he was young, he was afraid of everything. Now that he’s older, he’s angry all of the time, always having tantrums. Every small thing in life gets blown up to a huge thing. He feels as if everyone is judging him. My husband and I have to think about him 24 hours a day. We don’t even have time to feel guilty about neglecting the other two kids.”

Even in the best of times, parenting is a precarious balancing act—nurture and support on one side, control on the other. Maintaining the correct balance between the two is a goal that every parent takes very seriously. When a child is sick, the rules of parenting sometimes have to be revised, if not rewritten, and accommodations must be made. Still,
balance—between protecting a child and helping him to get well—remains something to strive for, tics or no tics.

Some parents find that the best response to a crisis in the family is action. One mother of a 13-year-old boy I’m treating for TS is constantly looking out for her son, clearing the path in front of him, but she is careful to stay behind the scenes, where her son can’t see her.

“The day before school opened, I went to the principal’s office and checked Philip’s schedule. I noticed some problems and asked the principal to make some changes. He said to me, ‘Oh, don’t worry. Phil can change it tomorrow.’ I said, ’No. You don’t understand. Phil can’t change things. When he
sets
these mistakes on his schedule, he’ll be too upset.’ I sat there until all the changes were made. The principal was great about it.”

Not all principals are great, of course, but this enterprising mother is politely unstoppable. Here’s more.

“Phil was going through a terrible time in sixth grade, so I wanted him to have a teacher who wouldn’t put too much pressure on him. I worked it out with the school in advance, but when he got to class on the first day of school, he had the wrong teacher, one I knew would be horrible for him. I marched in to talk to the principal, but they told me he couldn’t see anyone for two weeks. I said, very politely, That’s okay. I’ll just sit here and wait.’ And I did. He had no choice but to see me, and he did what I asked. I’m not an aggressive person; you can ask my husband. But my kid is too important for me not to go the extra mile. I mean, if my kid has to give a speech in class, he’s a nervous wreck until he’s called on and gets it over with. What’s wrong with asking a teacher to call on him first?”

As far as I can tell, there’s nothing wrong with the kinds of things that Phil’s mother routinely does behind the scenes. I’m in favor of parents’ protecting their children, of not putting a child in a position that will cause distress. For example, I advised another set of parents not to give their soon-to-be-13-year-old son, who had fairly serious TS, a traditional bar mitzvah celebration. The ceremony and the party afterward are stress-provoking for the most stalwart and brave boys; for this boy it would all be too much. Much to his relief—and theirs, I’m sure—the parents took the boy on a short trip instead.

Parents should be careful not to expect too much from their children, but they shouldn’t expect too little either. Children, even ones with a
serious disorder like TS, have to make their way in the world, and that means learning to fit in and follow the rules. There are certain symptoms that a child with TS can’t control, even when he is appropriately medicated, but there are others that can be reined in. Like any child, a youngster with TS must understand that there are limits. It’s the parents’ job to set and enforce these limits, to help a child to function in polite society. Allowing a child to behave badly does him no service whatsoever.

Out there in the real world people may not enjoy looking at facial tics or listening to throat-clearing, but those behaviors are tolerable in society. What people can’t and won’t tolerate is someone who shouts obscenities or touches everyone’s food at the dinner table. A child must be told what will and will not be permitted. For example, a child who misbehaves in a restaurant should know that his actions have consequences.

“Look, this behavior is really unacceptable,” a parent might say. “You have to stop arguing with us and cursing when we go out to a restaurant.

“Well, I have no control over it,” the child might answer.

“Your mother and I think you
can
control it. If you feel you are going to yell and can’t control it, we think you should leave the table. If you can’t control yourself, you won’t be able to go out with us to dinner anymore.”

“But I can’t help it.”

“We think you can, and the doctor thinks so too. Here’s an idea: if you feel the need to scream, excuse yourself from the dinner table and go wait in the bathroom until the feeling goes away.”

I’ve spoken to parents who worry about punishing a child for behavior he can’t control, and I sympathize with their concerns. But there’s nothing punitive or even unreasonable about that exchange. A child is not being threatened with punishment because he can’t stop blinking or sniffing. He’s being asked to modify behavior that he
can
control. By the way, this process of setting limits should be honored by the extended family, including close friends and doting grandparents. No one should be permitted to sabotage the parents’ efforts. Everybody should know and abide by the rules.

Psychotherapy is not part of the standard treatment package for Tourette syndrome, but parent counseling or family therapy can be extremely beneficial for all concerned as a family tries to invent ways to cope with a disturbing, sometimes all-absorbing brain disorder. Parents
of kids with TS need all the education and support they can get, and many find it by joining parent support groups or patient support groups, such as the Tourette Syndrome Association. The organization keeps its members up to date about the treatment of TS, publishes a regular newsletter, and sponsors various activities that bring together people whose lives are touched by TS. Once in a while they even arrange a movie screening. Their latest?
Twitch and Shout
, of course.

U
ntil a month before I met her, Claire, 15 years old, had always been the life of the party. Attractive, bubbly, and smart, she made excellent grades, held down a job at a drugstore after school, and had an active social life, including a boyfriend. I first saw Claire just after the start of her junior year of high school. Her parents said that she hadn’t really been herself since she returned from a summer away at camp. She’d been having trouble concentrating on her studies, she quit her job at the drugstore, and her boyfriend broke up with her. She’d been having a lot of trouble sleeping. Her parents said she was snappish and short with them and spent most of the day in her room. “Everything is an effort. I don’t enjoy anything,” Claire told me when we first met.

Charlie, also 15, was reading aloud in English class one day, and right in the middle of
A Separate Peace
he burst into tears. When the teacher took him to see the guidance counselor, Charlie was inconsolable, and his parents had to be called to pick him up. Everyone who knew the boy was baffled by what had happened. He seemed to have everything going for him—he was nice-looking, a talented musician, a good athlete, and a nearly straight-A student—but when he came to see me, he was sleeping all the time. For the past two months he’d been eating very little, and his weight was plummeting. He had stopped playing baseball. He said that he woke up every morning thinking that life wasn’t worth living.

Until about 15 years ago—the year that Charlie and Claire were born—it was generally accepted that children couldn’t
be
depressed, not clinically at least. The thinking was that the egos of children were not sufficiently developed to be affected by mood disorders. Today we know better. There is irrefutable evidence that major depressive disorder, or MDD, does exist in children and adolescents. In prepubescent children it’s quite rare, affecting only 1 to 2.5 percent of the population under the age of 12 and 2 to 8 percent of the population between the ages of 12 and 18. Among children it seems to affect boys and girls equally, but in the adolescent population females are more likely to have it.