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, 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 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 embarrassed, 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. 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. Nobody 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 el
ement in the behavioral treatment of enuresis: 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. Participating 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 circumstances—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 associated 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 embarrassed 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 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 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 participation 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 laund
ry. 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 class, 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.
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