It's Nobody's Fault_ New Hope And Help For Difficult Children And Their Parents Part 7

Six-year-old Victor was having a lot of difficulties in school, academically and socially. His speech hadn't developed according to the normal guidelines, and he was inattentive, occasionally disruptive, in cla.s.s. His social skills were similarly undeveloped, and the other kids in school often made fun of him. His parents suspected that Victor had a learning disability, and one of the teachers told them it might be attention deficit hyperactivity disorder; this is what finally brought them to my office. It was only after I had seen Victor a couple of times that I found out that he regularly wet his bed at night and sometimes wet himself during the day. The parents were well and truly disgusted with their son and made no effort to hide their negative feelings. When he came to see me, Victor was so downhearted that he spoke barely above a whisper.

THE BEDWETTING DEBATE.

Most children stop wetting their beds at night by the age of three, or five at the latest, but some-estimates put it at five to seven million kids-have trouble with this task. Those children suffer from enuresis, often referred to as bedwetting. According to the textbook, enuresis is the involuntary pa.s.sage of urine at least twice a week for a period of three months in children over the age of five. It may occur at night or during the day.

The disorder affects twice as many boys as girls. At age five the breakdown is 7 percent male versus 3 percent female. At age 10 it drops to 3 percent boys and 2 percent girls. Enuresis is rare in people older than 18: only 1 percent of all males and about half as many females continue to be bedwetters after age 18.

There are two basic categories of enuresis: primary and secondary. A child who has never been fully trained-that is, a child who has never achieved a six-month period of dryness at night-falls into the primary enuresis group, the more common of the two. A diagnosis of secondary enuresis applies to kids who have been dry for up to a year and then start wetting again. Secondary enuresis usually occurs between the ages of five and eight. (A sub-category of secondary enuresis is transient, or temporary, enuresis. This condition is brought on by trauma or stress, such as a divorce in the family, and may last anywhere from a couple of weeks to several months.) There's a high spontaneous recovery rate with enuresis; that is, the problem goes away all by itself. Some sources put it as high as 15 percent, lower with boys than with girls. It's not difficult to understand, then, why many pediatricians send concerned parents who seek their advice about a child with enuresis away with a cavalier, "Oh, he'll outgrow it." There's a good chance the child will will outgrow his problem, but there's also the distinct possibility that he won't. outgrow his problem, but there's also the distinct possibility that he won't.

Experts, by whom I mean pediatricians, urologists, psychiatrists, and psychologists, disagree about the age at which a child should be diagnosed with enuresis. The Diagnostic and Statistical Manual of Mental Disorders Diagnostic and Statistical Manual of Mental Disorders declares that five years old is the cutoff point, but some pediatricians feel that it's better to wait until a child is seven or eight before diagnosing enuresis. Why spend time and money, they ask, treating a child who's going to get better all by himself? There's a major flaw in that argument, however: a large percentage of the children who are wet at age five will still be wet at age seven, two years later, and declares that five years old is the cutoff point, but some pediatricians feel that it's better to wait until a child is seven or eight before diagnosing enuresis. Why spend time and money, they ask, treating a child who's going to get better all by himself? There's a major flaw in that argument, however: a large percentage of the children who are wet at age five will still be wet at age seven, two years later, and the longer a child has this symptom, the more likely he is to experience negative social consequences the longer a child has this symptom, the more likely he is to experience negative social consequences, including serious family conflict. Furthermore, a child is ent.i.tled not to be uncomfortable.

Controversy or no, if a child is five years old and enuresis persists for three months or more, I believe that something should be done about it. Parents should consult as many health professionals as it takes to satisfy themselves that their child is all right. If they don't, that child could end up with a nickname that will haunt him for a long long time.

THE SYMPTOMS.

Most younger children with enuresis, age five and six, aren't especially bothered by their condition. True, they probably don't enjoy waking up in wet sheets or seeing their parents get annoyed at them every morning, but the level of distress and dysfunction in these kids is generally quite low. As children get older and become more interested in having an active social life, enuresis begins to interfere more seriously in their lifestyles. Sleepover dates, summer camp, slumber parties-all these things are huge obstacles for the child with enuresis. (I treated a 13-year-old girl who used to stay up all night at pajama parties, even when everyone else was sound asleep. She was terrified that she'd have an accident in front of all her friends. Once, unable to keep her eyes open a moment longer, she spent a few hours dozing in the bathtub behind a locked door.) If a kid has a problem with wetting during the day, even going to school can be a trial. I've comforted more than one child who has been brought to tears when his cla.s.smates made fun of him because of the telltale odor of his wet pants.

THE DIAGNOSIS.

It is estimated that two thirds of all bedwetters never even make it into a pediatrician's office. Of those who do get to a pediatrician a sizable percentage are sent home with instructions to watch and wait. The kids who are referred to psychologists and psychiatrists are nearly always sent there because they have other behavioral problems, such as ADHD, learning disabilities, or aggression. Kids who have enuresis generally will show signs of other maturational delays, including speech lags and learning difficulties. Enuresis may also be a symptom of a power struggle between a parent and child.

Diane was a 10-year-old girl who was referred to me because of attention deficit disorder (see Chapter 7 Chapter 7). There was no hyperactivity a.s.sociated with Diane's disorder. In fact, Diane had a kind of dreamy, otherworldly quality, as if she were in some kind of trance. The little girl was an incredibly heavy sleeper, and she wet her bed nearly every night without even waking up.

Her patents told me that some nights Diane would be watching television, and, sitting on the sofa with the rest of the family, she would just urinate. To hear Diane tell it, she knew she needed to go, but she didn't want to get up. Other times she'd just sort of forget about it until it was too late. Everyone in her family was furious with her, naturally, but Diane really didn't understand why they were making such a big deal out of it.

Interviews with children who have enuresis are not usually very fruitful. Most children find it hard to explain their behavior.

"I don't know why I do it," one child might say. "It just slips out while I'm sleeping. I don't even know it's happening."

"I don't want to wet my bed. Sometimes I try to stay awake all night just to keep from doing it," says another.

"I think I was dreaming about going to the bathroom," says a third kid.

"Sometimes I'm too tired to get up and go to the toilet. I'd rather sleep," says a fourth.

The same few themes run through all the experiences of these children: I was playing with my friends and didn't notice that I had to go to the bathroom until it was too late; I was sleeping so hard I didn't even realize I had to go; I knew I had to go, but I couldn't wake up in time. Each one is a clear indication of enuresis.

THE BRAIN CHEMISTRY.

There are many theories about what causes enuresis. The most widely held is that the primary cause of enuresis is a maturational lag. Some of the systems in these kids, including the bladder and the brain, are not maturing as quickly as is to be expected in normal development.

There are experts who put all the blame on a child's bladder. Many kids with enuresis do, in fact, have a lower functional bladder volume than children without enuresis; this means that a child with enuresis will urinate as much as a normal child over a 24-hour period in terms of volume, but he will need to urinate more frequently in order to put out that same volume. The problem with this theory is that there are many people in the general population who have low functional bladder volume but do not not have enuresis. have enuresis.

Obviously, bladder function is not the only cause of enuresis. Regardless of the size of his bladder, the reason a child is wetting his bed is, ultimately, in his brain. His brain is not adequately reading the signal that his bladder is sending. His bladder tells his brain that it's full, but the brain just doesn't get the message, at least not in time.

A possible cause of enuresis is an abnormal regulation of a brain hormone called ADH (antidiuretic hormone), which determines the way that water is retained in the body. In some children with enuresis too little ADH is released at night, so that their bodies produce more urine than the bladder can handle. Another commonly held theory is that children with enuresis simply sleep more deeply than those who stay dry at night. Treatment with medications that lighten sleep have been effective in some cases.

Primary enuresis is genetic; what's more, a recent study has located the general site of a gene linked to primary enuresis. The gene is believed to be dominant dominant, which means that if one parent has enuresis, the child is likely to have the disorder too. Studies show that 75 percent of all children with enuresis have a primary relative-a mother or, more probably, a father-who also had the disorder. (As one of my colleagues said to me, only half-joking, "It's almost always the parent who doesn't come doesn't come to the appointment.") If one identical twin has enuresis, 68 percent of the time the other twin will have it-an extraordinarily high rate. If one fraternal twin has enuresis, the other twin will have it only 36 percent of the time. I nearly always discuss the genetic influences in the cause of enuresis with both parents and children, and I usually get a mixed reaction. Parents are embarra.s.sed, and kids are relieved and surprised. Many children don't realize until then that anybody else in the world has this problem, let alone someone in the family. to the appointment.") If one identical twin has enuresis, 68 percent of the time the other twin will have it-an extraordinarily high rate. If one fraternal twin has enuresis, the other twin will have it only 36 percent of the time. I nearly always discuss the genetic influences in the cause of enuresis with both parents and children, and I usually get a mixed reaction. Parents are embarra.s.sed, and kids are relieved and surprised. Many children don't realize until then that anybody else in the world has this problem, let alone someone in the family.

THE TREATMENT.

Virtually every child diagnosed with enuresis, either primary or secondary, receives behavioral treatment. Depending on the severity of the case and the effectiveness of the treatment, a child may benefit from medication as well. The goal in any treatment for enuresis is, of course, to change the child's behavior.

By the time a child comes to see me about this problem, there's a good chance his parents have already tried a few home remedies-not letting a child have any liquids after supper, for example, or restricting caffeine and sugar. Many routinely wake the child and escort him to the bathroom several times during the night, starting with the time the parents themselves turn in. I've known parents who set an alarm for every few hours all night so that they can wake their child. ("It takes me back to our two o'clock feeding days," one mother said.) Still others set alarm clocks for their kids.

All of these efforts can pay off sometimes. If a child is caught at exactly the right time and he empties his bladder, he may well wake up in a dry bed the next morning. (A lot of kids with enuresis tend to wet during the first two or three hours of sleep.) Of course, none of these remedies teaches a child new behavior-he doesn't learn to respond to an internal signal-so any improvements are likely to be temporary. What's more, these activities don't usually do much to improve family harmony. Parents don't take any pleasure in getting up several times a night to wake their kids, and kids positively hate having their sleep interrupted and being dragged to the bathroom. In some instances children become downright defiant, and the problem gets even worse.

The more formal treatment for enuresis isn't exactly fun either, but it does get excellent results-about an 85 percent success rate after six months. The first thing I ask parents who consult me to do is to keep a dry-wet calendar. Over a period of a month parents keep track of how many nights a child was wet and how many nights he remained dry. Then we have our baseline, and we can measure how serious the problem really is. For very small children, keeping the calendar may be sufficient to solve the problem. Simply being made aware of the problem can be enough to motivate some children to fix it, especially if those dry nights are rewarded with a small token.

At the heart of nearly all enuresis treatment is a device called the bell and pad. bell and pad. There are several versions of the bell and pad, but the principle is always the same: somewhere in the bed-under the sheet or perhaps even attached to a child's pajamas-there is a pad with a sensor that detects wetness. At the very first sign of wetness that sensor causes a bell to ring, waking the child. The child then gets up, runs to the bathroom, and urinates in the toilet. There are different kinds of pads and sensors and variations on the theme of a bell too. Some alarms are worn on the wrist. Others get attached to the collar of a child's pajamas right near his ear. Still others are made to go under a pillow or sit on a night table. Since children with enuresis are notoriously heavy sleepers, these alarms sometimes fall on deaf ears, especially if the kids become experts at hiding them. The rest of the family wakes up to the alarm, but the child in treatment sleeps right through it. One mother solved this problem by keeping the bell in a coffee can, so that the ringing sound reverberated. There are several versions of the bell and pad, but the principle is always the same: somewhere in the bed-under the sheet or perhaps even attached to a child's pajamas-there is a pad with a sensor that detects wetness. At the very first sign of wetness that sensor causes a bell to ring, waking the child. The child then gets up, runs to the bathroom, and urinates in the toilet. There are different kinds of pads and sensors and variations on the theme of a bell too. Some alarms are worn on the wrist. Others get attached to the collar of a child's pajamas right near his ear. Still others are made to go under a pillow or sit on a night table. Since children with enuresis are notoriously heavy sleepers, these alarms sometimes fall on deaf ears, especially if the kids become experts at hiding them. The rest of the family wakes up to the alarm, but the child in treatment sleeps right through it. One mother solved this problem by keeping the bell in a coffee can, so that the ringing sound reverberated. n.o.body n.o.body could sleep through that. could sleep through that.

The bell and pad treatment takes time, but it does work if it is used consistently. A child probably will have occasional relapses, but "booster" sessions with the bell and pad will usually put him back on track when that happens. Care must also be taken not to stop the treatments too soon. For instance, a child who is wetting seven nights a week when he starts using the bell and pad may quickly work his way down to wetting five, then four, three, even two nights a week. After several weeks he may be dry for an entire week, and eventually he'll get to the point where he spends two consecutive weeks completely dry. Some parents (and children) are eager to toss out the bell and pad at this point. But we recommend a more gradual withdrawal.

The first week the child may sleep without the bell and pad for one night, the second week he can go without it for two nights, and so on. (This is also a good time for parents to put a child's new habits to a real test by letting him drink a pint of liquid before going to bed. By this time his bladder should be able to detect the sensation of fullness, and he should be able to wake up in time to get to the bathroom.) By the seventh week he'll be weaned off it entirely, and he's less likely to have a relapse than if he'd kicked the bell and pad cold turkey. No one wants the child to fail and have to go through the whole process over again.

The bell and pad treatment works, but it's not always easy, especially at the beginning. It takes enormous patience and commitment on the part of parents. It's tempting for parents to give up easily, and I've met many who did. "We tried the alarm and it didn't work," a mother might say after a week. "He sleeps right through it." In the first two weeks a child literally has to be taught to wake up when he hears the sound of an alarm, not the sound or the nudges of his parents. That means letting the alarm sound until the child is awake and out of bed, not turning it off when it gets to be too annoying. It also means that if a child doesn't hear the alarm, the parents have to figure out a way to make it louder. Where there's a will there's definitely a way.

The bell and pad treatment can be made even more effective if it is combined with a system of positive and negative reinforcement. If a child is dry, he gets a small reward, something as little as a gold star or perhaps a sticker. A certain number of stars or stickers may be traded in for a prize a child values, such as playing a video game or buying a comic book. If a child is not dry, he gets something taken away. We're not suggesting actual punishment; parents should take away privileges and treats-television time, snacks, that sort of thing-that the child doesn't really need anyway. Making fun of a child, striking him, or otherwise abusing him for this behavior doesn't help, and it will damage him further. Kids, especially older ones, are humiliated enough by their problem without having the situation made worse by frustrated, irritated family members with a short fuse. Parents should let their children know that undesirable behavior has consequences, but they shouldn't add to the child's distress.

We strongly suggest including another element in the behavioral treatment of enuresis: cleanliness training. cleanliness training. When a child wakes up wet in the middle of the night, he has to help strip the bed of its wet sheets, take them to the laundry hamper, and put clean sheets on the bed. He also has to take his underwear and pajamas to the hamper and choose dry clothes. This increases a child's motivation to jump out of bed the moment he hears the bell and not just lie there thinking about it. The faster a child reacts to the bell, the less work there is to be done. Partic.i.p.ating in the cleanup makes the child more conscious, more awake during the process. Few kids can change their sheets when they're half asleep. Getting involved in this way also forces children to take more responsibility for their actions. Finally, sharing the burden of housework may keep some parents from blowing their stacks. When a child wakes up wet in the middle of the night, he has to help strip the bed of its wet sheets, take them to the laundry hamper, and put clean sheets on the bed. He also has to take his underwear and pajamas to the hamper and choose dry clothes. This increases a child's motivation to jump out of bed the moment he hears the bell and not just lie there thinking about it. The faster a child reacts to the bell, the less work there is to be done. Partic.i.p.ating in the cleanup makes the child more conscious, more awake during the process. Few kids can change their sheets when they're half asleep. Getting involved in this way also forces children to take more responsibility for their actions. Finally, sharing the burden of housework may keep some parents from blowing their stacks.

Everybody with a problem, any problem, wants quick results, of course, but the mother who contacted me last year about her son with enuresis deserves some sop of prize in that category. The call came on June 15. "Look, Keith is going away to camp at the end of the month for two weeks," she told me. "I really need him to be dry by then."

In fact, there is a "quick fix" for enuresis. It's called Desmopressin nasal spray, a synthetic antidiuretic hormone that decreases the number of a child's wetting episodes in one to three nights. Desmopressin has no effect on a child's long-term behavior, but it does help to keep children dry. The spray can be indispensable in the early stages of the bell and pad treatment. I've also used it on kids in special circ.u.mstances-such as sleepaway camp-and when there's special distress, especially for children being physically abused by their parents for wetting their beds. As medications go, Desmopressin is quite safe for children. Mild nasal irritation and headache are infrequent side effects. Desmopressin may lower the seizure threshold, so caution must be exercised in giving it to a child with a seizure disorder. Otherwise children tolerate the drug very well.

Before we had Desmopressin spray, the standard medication used in the treatment of enuresis was one of the TCAs (tricyclic antidepressants), especially Tofranil, which is often prescribed for separation anxiety disorder in children and depression in adults. No one is sure precisely why the tricyclics have an effect on this disorder. They may change a child's sleep patterns, so that he doesn't spend so much time in the deep stages of sleep. They seem to have an effect on the sphincter (the muscle that holds the bladder closed), and because they affect the brain's level of norepinephrine, they may increase functional bladder volume. There are many side effects a.s.sociated with Tofranil. One of the less disturbing of those side effects is dryness: dryness of the mouth, dryness of the eyes, and urinary retention. Of course, for a kid who regularly wets his bed, a little dryness can be a wonderful thing. The more serious cardiac side effects of Tofranil are rare at the low doses prescribed in the treatment of enuresis.

Tofranil can play an important part in the treatment of enuresis, but it is no cure by itself. Without behavioral treatment, such as the bell and pad, the problem will come back the moment the medication is stopped. Tofranil should be used sparingly and only in conjunction with the bell and pad. Ideally, as soon as a child starts to respond to the bell and pad, his Tofranil dose should be gradually lowered. The child may start to wet a little bit as he is weaned off the medication, but by then he should be waking up when he hears the bell.

There are other medications that have been tried, sometimes with success, in the treatment of enuresis. Dexedrine prescribed with the bell and pad can sometimes speed up the training process, simply because the medicine lightens a child's sleep. It's easier to train a child with the bell and pad if he's not too deeply asleep.

At the end of the day, however, the best treatment of enuresis is behavioral, and that means the bell and pad. Medication may physically decrease a child's urine output or keep him awake or allow him to focus better on the task at hand, but the only thing that is going to make his problem go away and stay away is learning a new way to behave. His brain has to learn to listen to and hear the message coming from his bladder.

PARENTING AND ENURESIS.

The sad truth about enuresis is that many parents of children with this disorder are embarra.s.sed and even repulsed by their children's behavior. Emotions run extraordinarily high. "I just can't believe that he can just lie there and do that every night," one squeamish mother said to me. "The sheets are so disgusting I practically get sick to my stomach every morning."

Other parents get angry, convinced that the child is wetting his bed on purpose. "How come he doesn't wet the bed when he spends the night at his grandmother's house?" one father demanded. "He's just doing it to make us crazy." As difficult as it may be for some mothers and dads to believe, enuresis is not volitional. Children do not not wet their beds on purpose. If they're dry when they spend a night away from the family home, it's probably because they are not sleeping as soundly there are they do in their own beds. wet their beds on purpose. If they're dry when they spend a night away from the family home, it's probably because they are not sleeping as soundly there are they do in their own beds.

One of the most important reasons that this disorder is so emotionally charged is that in three out of four cases the parent-usually Dad-used to wet the bed as well, and most parents aren't too happy to take that particular trip down Memory Lane. Someone who went through a traumatic experience himself can find it extremely upsetting to watch his child go through it, and his attempts at empathy may misfire. In talking to parents I try to "de-emotionalize" the issue, to keep it as unconnected to the emotions as possible, especially on the part of the parents. Behavioral treatment won't work very well if everyone is upset all the time.

The treatment also won't work unless everyone is motivated. I've seen plenty of cases in which the parents think that enuresis is a problem, but the kids couldn't care less. A five-year-old named Alex was brought in by his mother. Alex was wetting his bed nearly every night, and several days a week he returned home from kindergarten in fresh clothes, having had an accident in the ones he was wearing that morning. The teacher hadn't complained, but the mother, quite sensibly, thought she'd better make sure nothing was wrong with Alex.

As the three of us discussed Alex's problem, it became clear that the mother was experiencing some distress, but Alex was just fine about it. When I asked Alex directly how he felt, he was quite cheerful: "Oh, I just don't like getting up in the middle of the night. I'd rather sleep." What about wetting himself at school? Well, the kids didn't make fun of him and the teacher didn't scold him, so he didn't really mind.

Obviously a child like Alex has to be made to understand and appreciate that he has has a problem before he can be effectively treated for it. One way to do that is to promise a reward for good behavior ("You will get a star for every dry night and your favorite ice cream for every three stars") and/or a punishment for continued undesirable behavior ("You have to try to stop wetting your bed. For every wet night, you will lose an hour of television"). In reality, however, neither of these strategies works very well unless the child is experiencing some distress. When I see someone like Alex, I'm tempted to tell the parents, "Why don't you come back in six months or when your kid wants to do something about his problem?" Without the child's partic.i.p.ation the process is probably doomed. a problem before he can be effectively treated for it. One way to do that is to promise a reward for good behavior ("You will get a star for every dry night and your favorite ice cream for every three stars") and/or a punishment for continued undesirable behavior ("You have to try to stop wetting your bed. For every wet night, you will lose an hour of television"). In reality, however, neither of these strategies works very well unless the child is experiencing some distress. When I see someone like Alex, I'm tempted to tell the parents, "Why don't you come back in six months or when your kid wants to do something about his problem?" Without the child's partic.i.p.ation the process is probably doomed.

On the other hand I've also seen situations in which the child cares more about solving the problem of enuresis than his parents do. I worked with 12-year-old Brendan and his parents with the bell and pad for about three months. The parents never really got the hang of what they were supposed to do; it was obvious they found the whole thing distasteful and didn't want to be involved. But Brendan was desperate to stop wetting his bed, so he persuaded his parents to let him work with me directly. Brendan used to call me on the phone himself whenever he needed help working with the bell and pad. All his parents had to do was to keep their end of the bargain. For every week Brendan was dry, they took him to a movie on the weekend.

It's not easy to be a parent of a child with enuresis. There are a lot of tears involved, not to mention a great deal of extra laundry. The behavioral treatment we recommend takes time and patience, and even if everything goes well, parents most likely will lose sleep over it, literally and figuratively. But the treatment does work, and the results-more friends, increased confidence, greater self-esteem-will make an enormous difference in a child's life.

CHAPTER 13.

Tourette Syndrome Becky, 10 years old, had always been bothered by little tics. First came the blinking, which she did nearly all the time. Next were the shoulder shrugs. Recently she had started clearing her throat all the time, usually quite loudly, slapping her thighs, and bending her arm behind her. When people asked her why she did those things, she always came up with an explanation. The sunlight was making her blink or she was coming down with a cold or she needed to scratch her back.

I met 12-year-old Kevin two days after he set fire to his grandmother's house. Kevin was no stranger to doctors; he'd been treated for severe asthma since he was five. (He announced, quite proudly, that he had been hospitalized 35 times.) His parents, who brought him to my office because of the fire, were used to Kevin's not being like other kids in the neighborhood-he'd always been a "little odd," they told me-but arson was more than they could handle. Besides, he didn't seem to be able to concentrate in cla.s.s, and his grades were dropping. What his parents didn't tell me was that Kevin had tics, lots of tics. He blinked his eyes, cleared his throat, and grimaced almost constantly. He repeated himself often. When I asked Kevin's mom and dad about the tics, they seemed surprised, as if they hadn't really noticed them before. They did recall that their son used to bang his head at the age of two. They thought he'd been blinking since about six.

"TWITCH AND SHOUT"

When I was a kid, I used to love talking to my best friend's father, partly because he was a terrific guy but also because he did what I thought was a great imitation of a turtle-craning his neck and bobbing his head all the time. He was constantly in motion, and quite noisy too; I'll always a.s.sociate the sound of keys and money jangling in a pocket with my childhood and Mr. Knepper. Sometimes the sound was so loud I couldn't hear his voice, especially since he was always clearing his throat. My parents told me that Mr. Knepper was "a very tense man." My guess is that my pal's dad had a mild case of Tourette syndrome.

Over the last several years Tourette syndrome (TS), a relatively rare brain disorder characterized by involuntary motor and vocal tics involuntary motor and vocal tics that begin before the age of 21 and last for at least a year, has been getting a lot of attention, in fact and fiction. A story line of the hit TV show that begin before the age of 21 and last for at least a year, has been getting a lot of attention, in fact and fiction. A story line of the hit TV show LA Law LA Law had one of the Mackenzie, Brackman attorneys defending the rights of a man who'd been fired because of Tourette syndrome. Oliver Sacks wrote had one of the Mackenzie, Brackman attorneys defending the rights of a man who'd been fired because of Tourette syndrome. Oliver Sacks wrote An Anthropologist on Mars, a An Anthropologist on Mars, a book about Dr. Carl Bennett, a Canadian surgeon diagnosed with TS at age 37. The subject even made a couple of appearances on the sports pages, when Phillies outfielder Jim Eisenreich and Denver Nuggets guard Mahmoud Abdul-Rauf went public with the news that they have TS. In the spring of 1995 a doc.u.mentary about Tourette syndrome-called book about Dr. Carl Bennett, a Canadian surgeon diagnosed with TS at age 37. The subject even made a couple of appearances on the sports pages, when Phillies outfielder Jim Eisenreich and Denver Nuggets guard Mahmoud Abdul-Rauf went public with the news that they have TS. In the spring of 1995 a doc.u.mentary about Tourette syndrome-called Twitch and Shout Twitch and Shout-won critical acclaim.

The TS numbers aren't very large. It is estimated that some 200,000 Americans have full-blown Tourette syndrome and that another 1.8 million have some tics. Only about 1 in 2000 schoolchildren have the disorder, but as many as 15 percent have transient tics, ones that come and go. TS is much more commonly diagnosed in males; some studies say that the ratio of males to females is 3 to 1, while others put it at 5 to 1.

It often takes some time for tics to make an appearance in a child later diagnosed with TS, although very young children will sometimes rock or bang their heads. Most kids with TS were being treated by age two or three for sleep disorders, language problems, or behavioral difficulties; parents say they're restless, difficult, or oppositional-like the firebug Kevin, described earlier in this chapter. They're easily frustrated and have frequent temper tantrums. They have more sleep disorders, especially sleepwalking, than the general population of youngsters. They usually have trouble concentrating on their studies and getting along with their peers, so teachers may think that these children have attention deficit hyperactivity disorder. By the time these kids reach my office, many of them have been examined by a battery of experts, from allergists to neurologists to ophthalmologists. The words "Tourette syndrome" probably have not come up. If the words have been spoken, there's a good chance the parents have not accepted them as gospel.

It's only at around age six or seven that children with TS start getting simple motor tics; the vocal tics begin at about nine. Typically the symptoms increase as a child matures, and TS is usually at its most severe during adolescence. Their symptoms may decrease, or even disappear, as kids reach their twenties, but some will continue having severe TS symptoms as adults. The worst tic I ever witnessed was in a 30-year-old man with a whole body tic; he would arch his entire body and throw himself backward.

Motor tics seem to follow a head-to-toe progression. Someone who has had TS for a number of years will usually say that it all started with a facial tic-the eyes or nose or mouth-and then moved, in turn, to the shoulders, arms, and legs. As the disease progresses, the tics also become more complex; tics wax and wane and change form. Motor tics do not automatically indicate TS. A diagnosis of TS requires both motor and vocal tics. That's why the doc.u.mentary is called Twitch and Shout. Twitch and Shout.

THE SYMPTOMS.

The motor and vocal (also called phonic) phonic) tics a.s.sociated with TS may be simple or complex. The most common simple motor tics are blinking, shrugging, grimacing, and nose twitching. The complex motor tics are slower and may appear purposeful: kissing, pinching, sticking out the tongue, touching, gyrating, throwing things, making obscene gestures (called copropraxia), and imitating the gestures of others (echopraxia). Simple vocal tics are meaningless sounds and noises, including grunting, tongue-clicking, hooting, and clearing of the throat. Complex vocal tics are words that have some meaning even if they make no sense: "But! But!" or "Oh, boy!" for example. The best known complex vocal tic a.s.sociated with TS is actually the least common: coprolalia, or outbursts of foul language. (Not surprisingly, the tics a.s.sociated with TS may be simple or complex. The most common simple motor tics are blinking, shrugging, grimacing, and nose twitching. The complex motor tics are slower and may appear purposeful: kissing, pinching, sticking out the tongue, touching, gyrating, throwing things, making obscene gestures (called copropraxia), and imitating the gestures of others (echopraxia). Simple vocal tics are meaningless sounds and noises, including grunting, tongue-clicking, hooting, and clearing of the throat. Complex vocal tics are words that have some meaning even if they make no sense: "But! But!" or "Oh, boy!" for example. The best known complex vocal tic a.s.sociated with TS is actually the least common: coprolalia, or outbursts of foul language. (Not surprisingly, the LA Law LA Law character with TS had this symptom. That's show biz.) Only about 15 percent of those diagnosed with TS have such outbursts. Somewhat more common is echolalia, the mimicking of the words of others. character with TS had this symptom. That's show biz.) Only about 15 percent of those diagnosed with TS have such outbursts. Somewhat more common is echolalia, the mimicking of the words of others.

There's a lot of shame connected with TS; after all, the symptoms can seem pretty strange. When kids are very young, with only minor tics, they're usually not too anxious about it, but when the teasing starts-and it nearly always does-a child quickly loses confidence and self-esteem. Adolescence can be brutal, as a child's symptoms typically worsen and peers become relentless in their criticism. One teenage girl I treated for tics was called a "r.e.t.a.r.d" and a "mutant" by her cla.s.smates at school. That was on the good days.

It's easy to understand, therefore, why some children are not always forthcoming or honest about their symptoms. In fact, their imaginations sometimes work overtime as they try to invent plausible explanations for inexplicable behavior. A little boy told me he clears his throat all the time because he's got a tickle in his throat. "Maybe it's postnasal drip," he said. A child who is obviously involved in an involuntary action will sometimes try to make it seem voluntary, converting a shoulder shrug into a stretch, for instance. Jessica, an 11-year-old girl I treated last year, had so many body tics she practically tied herself in knots trying to hide them. Between the energy used up by the tics themselves and the additional energy expended to camouflage them the poor kid was completely spent.

Complicating the detection of symptoms further is the fact that in addition to waxing and waning, tics may occasionally be suppressed, either willfully or not. Suppression of tics nearly always occurs when kids are asleep or when they're engaged in an activity that requires serious concentration. I've seen children with very severe tics who are tic-free when they play Nintendo. I once watched two 13-year-old boys play a killer game of handball. The boys were evenly matched, and the compet.i.tion was fierce. Both kids appeared to be completely normal. When the game was over, I noticed that one of the boys-the winner, as it happened-was a ma.s.s of tics: blinking, grimacing, and shaking his head from side to side. The other boy asked him-with all the delicacy and sensitivity for which children are famous the world over-what the h.e.l.l h.e.l.l he was doing. "Oh, I just do this between games," the boy with the tics replied. he was doing. "Oh, I just do this between games," the boy with the tics replied.

It's not uncommon for a parent to notice TS symptoms while a teacher is unaware of them. If they can manage it, many kids hide their tics while they're at school. A child will be mild-mannered and well behaved all day in cla.s.s and a total mess the minute he gets home. "He'd open the door, and his books would just go flying," said the mother of a 13-year-old boy who kept his tics under control all day at school. "One day he walked in, twitching like mad, and called me a b.i.t.c.h. Keeping everything bottled up all day just made everything worse. He literally couldn't control himself for another minute. He had to let it out." I had occasion to see this same boy at school one day. Laughing with his friends, who obviously found him very good company, he seemed like a normal all-American boy.

THE DIAGNOSIS.

Motor and vocal tics are the essential symptoms of Tourette syndrome, but it's rare to find a child who has just a tic disorder. Some 40 percent of all kids with TS also have attention deficit hyperactivity disorder (see Chapter 7 Chapter 7), and even more of them-perhaps as many as 80 percent-have symptoms of obsessive compulsive disorder (Chapter 8). Many children have all three disorders at once, a situation that can, of course, cloud a diagnosis and make treatment quite complicated. The diagnosis of Tourette syndrome comes only after taking a history from the child, the child's parents, and, whenever possible, the child's teachers.

Ron, 10 years old, was referred to me after being diagnosed with severe ADHD and some serious language problems. During our first visit I didn't notice that he had tics, although it was obvious he had a number of compulsive symptoms. For example, he had to touch everything in my office five times; I could hear him counting the touches under his breath. The following week I was talking to Ron's mother while Ron waited outside, and I heard a barking noise. The sound was repeated several times. "That's Ron," his mother said finally. "You know, he does this all the time." His vocal tic was later confirmed by his teachers, and it became clear that he had some motor tics as well. His family history was full of language disorders, stuttering, and tics. In addition to ADHD and OCD Ron obviously had Tourette syndrome.

Janis's parents brought her in for an examination because her teachers had been complaining about her behavior in school. Mom and Dad suspected ADHD. Janis, nine years old when I first saw her, had had what her parents called "crazy fears" nearly all her life. Her earliest fear was of ducks. Lately she was terrified to go anywhere in the car because she thought people in the other cars were looking at her. Vans in particular sent her into a tailspin. (Janis knew, by the way, that her fears had no basis in reality, but they still caused her great distress.) This time I noticed a tic right away, since Janis had echolalia; she repeated just about everything anybody said, often many times over. Again there was a family history of tics, and Janis's parents, when questioned directly about it, remembered that their daughter had had both vocal and motor tics in the past that had since disappeared. I diagnosed TS.

Parents are not likely to welcome the news that a child has TS, but in my experience children are relieved to learn that what is wrong with them has, finally, a name. "What you have is called Tourette syndrome. About 200,000 other people have it too, and this is what we're going to do to make you feel better" feels a lot more comforting to a kid than the notion that he can't control his own body. "I can't keep my leg from moving," a third grader said to me with tears in her eyes. "I can't stop blinking," said another, equally distressed. Almost without exception kids are rea.s.sured to know that there's a real problem and that help is on the way.

THE BRAIN CHEMISTRY.

There's a great deal of evidence to suggest that dopamine is the neurotransmitter that is most strongly affected in Tourette syndrome, but norepinephrine and serotonin seem to play major roles as well. (Neuro-transmitters in the brain do not act independently; they all interact.) Basically, a child with TS has too much dopamine and too little norepinephrine and serotonin. We know that medications that block dopamine and medications that increase norepinephrine are helpful in the treatment of TS. We also know that dopamine-enhancing agents make tics worse. Neuroimaging techniques, such as CAT and PET scans, have demonstrated differences in the size and activity level of certain parts of the brains of patients with TS.

Tourette syndrome runs in families, but it's not always a simple matter to detect the disorder. While TS is genetically transmitted, having the gene makes a person a "carrier"; it doesn't necessarily mean he will have the symptoms of the disease. It's extremely important to obtain a comprehensive family history when we suspect TS. Of course, not all parents realize that they have a history of tics in the family. Every child and adolescent psychiatrist has stories about parents who are less than candid in their responses, either because they're hiding something or because they're ignorant, blissfully or otherwise.

Many parents who see tics in their children don't recognize their own tics or identify them as such; they're just harmless "habits." One of my favorite experiences in that category came a few years ago. I was evaluating a little boy with the symptoms of TS, and I asked his parents the standard question: "Is there anyone in the family who has tics?" Both replied with an emphatic no. The problem was, at the time Dad was twitching and shrugging so much he was making the chair shake, and Mom was constantly clearing her throat.

THE TREATMENT.

I'll never forget the day I told Barry, a nine-year-old boy with a sweet smile and a wonderful disposition, that he had a tic disorder. "A tic disorder?" he said. "Does that mean I have to wear a flea and tick collar?"

Nothing would have made me happier than to say yes. All doctors fantasize about a magic cure for disease. Why not a tic collar for treating Tourette syndrome? Unfortunately, however, there is no cure, magic or other, for TS. The best we can do is to control the disorder, and there are two basic methods of doing this. The first is relaxation techniques, especially self-hypnosis. The more tense and anxious a child is, the more severe his TS symptoms will be. If we can relieve stress, we can decrease symptoms. Even if the first element of the TS treatment is effective, we will almost always need the second part as well: medication. The recommended drugs for the treatment of TS fall into two major categories, neuroleptics neuroleptics and and antihypertensives. antihypertensives. Both offer good news and bad news. Both offer good news and bad news.

The neuroleptics work, but the side effects a.s.sociated 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 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 doc.u.mented. 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. Embarra.s.sed 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.

PARENTING AND TS.

"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 princ.i.p.al's office and checked Philip's schedule. I noticed some problems and asked the princ.i.p.al 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 sets these mistakes on his schedule, he'll be too upset.' I sat there until all the changes were made. The princ.i.p.al was great about it." these mistakes on his schedule, he'll be too upset.' I sat there until all the changes were made. The princ.i.p.al was great about it."

Not all princ.i.p.als 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 cla.s.s 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 princ.i.p.al, 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 cla.s.s, 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.