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Authors: Harold Koplewicz

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Before a final diagnosis of OCD is made, other disorders with similar symptoms must be ruled out. For instance, children with separation anxiety disorder (see
Chapter 9
) may appear to have OCD. One example was a schoolboy who would get down on his knees in the classroom
several times every day and rock back and forth. At first he was thought to have OCD, but he eventually explained that he was just praying that his parents were all right.

Schizophrenia (see
Chapter 16
), which is very rare in children, may include symptoms similar to those of OCD. Kids with schizophrenia usually look withdrawn. They’re living in an internal world, unlike children with OCD, who are very much with us. A child with OCD recognizes that his fear of germs is illogical, but the child with schizophrenia believes that those germs are a real threat to him or others. OCD may also look like Tourette syndrome (TS; see
Chapter 13
), an illness in which children have a variety of motor and vocal tics. Unlike the actions associated with OCD, Tourette’s tics are involuntary. OCD often occurs with TS; that is, a child may have both brain disorders at once.

Patients with OCD who are obsessed with fears of contamination may refuse to eat and begin to lose weight, behavior that must be distinguished from that associated with anorexia nervosa. (Some 20 to 40 percent of all adolescents with eating disorders will also have OCD.) A 13-year-old boy named Brian was brought to our emergency room because he was dehydrated. According to his parents, he had basically stopped eating. Anorexia was the first diagnosis that came to mind, naturally, but after taking a history the doctor learned the real story about Brian’s food avoidance. It all started when he refused to eat Reese’s Pieces candies (prominently featured in the movie
E. T.
, Brian’s favorite). Brian was preoccupied with the idea that if he ate Reese’s Pieces, something terrible would happen to him. The fear of Reese’s Pieces led to a fear of peanut butter and then, gradually, to a fear of just about all food. The diagnosis became clear: OCD.

THE BRAIN CHEMISTRY

Animal studies have indicated a neurological basis for many OCD symptoms. These ideas were reinforced by an association between certain neurological illnesses and OCD. For example, there are numerous case reports of people who developed OCD after recovering from encephalitis, an inflammation of the brain caused by a virus or bacteria. We also know that patients who have Sydenham’s chorea tend to have a higher than usual incidence of OCD. (Sydenham’s chorea is a disease of the
basal ganglia. Basal ganglia contain a lot of serotonin.) Neuroimaging devices, such as CAT and PET scans, reveal specific differences in the brains of patients with OCD and those without the disorder. All of the differences are in the basal ganglia and the frontal lobes. Neurosurgery treatment in which the basal ganglia are disconnected from the frontal lobes has been successful in severely ill patients with OCD who did not respond to other treatment. Put together, this evidence strongly suggests that OCD is caused by a deficiency of serotonin in the brain. That theory is strengthened even further when we see that medicine that increases serotonin is extremely effective in treating OCD.

The brain disorder that causes OCD runs in families; recent studies show that 20 percent of all youngsters with OCD have a family member with the disorder. Sometimes it takes a little digging to discover who the “donor” in the family is. I’ve talked to parents who at first claim that there’s no family history of OCD, but nine times out often they change their minds. “Wait a minute,” someone will eventually say. “What about your brother? Didn’t he used to shrug his shoulders all the time?” or “Don’t you remember? Cousin Betty used to go up to the attic 20 times a day to see if the fan was on.”

More often the family connection is more obvious and immediate. One mother whose little girl I diagnosed with OCD wakes up at five o’clock every morning and cleans the entire house, scrubbing the bathrooms at least twice. Her husband says that the family spends more money on cleaning products than on groceries.

THE TREATMENT

The recommended treatment for OCD is a combination of behavioral therapy—most notably
exposure
and
response prevention
—and medication. If children are not in great distress, a doctor may find it worthwhile to try behavioral therapy first without the medicine, but most kids who end up in a doctor’s office because of OCD symptoms need the relief that medicine affords.

One child with OCD I treated, an 11-year-old boy named Daniel, used to spend hours getting ready for school in the morning. He said he “got stuck” in the shower; he’d start washing and almost couldn’t stop. Despite his symptoms Daniel wanted to go to sleepaway camp for a
couple of weeks, and his parents decided to let him give it a try. It’s not difficult to imagine what his fellow campers and his counselors thought the first time they saw Daniel “stuck” in the shower. After about ten minutes under the spray Daniel was dragged bodily out of the shower and berated. “You’re nuts!” the campers shouted. “Get dressed right now!” said the counselors. “If you don’t dress yourself, we’re gonna dress you.

Those young campers had no way of knowing that they had invented their own variation of one of the most effective forms of behavioral therapy for OCD: response prevention. In response prevention the patient is forced to confront his worst fears and, ideally, work his way through the anxiety created by a given situation. Some experts call it “letting the anxiety burn itself out.” Response prevention is based on the fact that the body can’t maintain a state of anxiety for more than 90 minutes; most people can manage only about 45 minutes.

In treating a child with OCD a therapist will conduct an extended session in which a child has to live through the anxiety. For example, a little girl who can’t bear to have dirty hands is forced to make mud pies and then sit quietly for an hour without washing. Another child terrified of germs is led to a chair and then told that someone very sick has just been sitting there. The goal: to teach a child to break the connection between anxiety and that condition. Obviously it’s necessary to involve the parents in a child’s treatment for OCD—as always, mothers and fathers are indispensable co-therapists—but a qualified behavioral therapist is necessary to guide and monitor this sensitive process. A manual and a 16-week behavioral treatment program—both called “How I Ran OCD Off My Land”—have been developed for the treatment of children and adolescents with OCD.

Most experts agree that behavioral therapy is especially effective in combination with medicine. The drugs prescribed for OCD most often are the SSRIs (selective serotonin reuptake inhibitors): Luvox, Paxil, Prozac, and Zoloft. Currently, Luvox is the only SSRI with FDA approval for use in children with OCD. Anafranil, a tricyclic antidepressant (TCA) that inhibits serotonin, is also effective in treating OCD. Normally we see the results of medication within two to six weeks. The most common side effects of the SSRIs are nausea, diarrhea, insomnia, and sleepiness. Anafranil’s side effects include sleepiness, dry mouth, constipation, and the more serious cardiac effects of all TCAs. To be on the
safe side, we always measure a child’s heart rate and blood pressure and do an electrocardiogram before starting a child on Anafranil and before increasing the dosage.

Just about all children will need to stay on the medication for six to nine months, during which time they should undergo behavioral therapy as well. After they’re taken off the medicine, children should get follow-up evaluations on a regular basis, and they will also benefit from “booster shots” of behavioral therapy.

Some children being treated for OCD with medication will demonstrate only a partial response or will respond fully but then “break through” the medication with a recurrence of symptoms. When either of those things happens, we first try to improve the response by increasing the dose of the original medicine. If that fails to achieve the result we’re looking for, we’ll try
augmentation:
that is, we’ll prescribe an additional medicine that will makes the original drug more effective. (Some people think of it as a “chaser.”) The second medicine we prescribe will also take aim at any secondary symptoms that are associated with a child’s OCD. If he’s moody, we’ll add lithium; if he also has ADHD symptoms, we’ll try Dexedrine; Haldol will be added if the child has tics; and we prescribe BuSpar or Klonipin if the child’s secondary symptom is anxiety. It may take a few tries to find the right combination, but some combination nearly always works.

As I’ve said earlier, parents who are reluctant to give medicine to their children, especially very young children, should be mindful that while there may be negative side effects of the medicine, there are also negative effects connected to
not
taking the medication. The youngest child I’ve ever treated with this disease was four years old, and I prescribed Prozac for him. What are the long-term effects of giving a kid Prozac (and thus changing his serotonin metabolism) at the age of four? No one knows for sure. What we do know is that a child in pain has to have some relief. That four-year-old I treated was completely unable to function; his many habits—turning in circles, shrugging, hopping, and scratching—had completely taken over. After four weeks on low doses of Prozac he was behaving like a normal, happy four-year-old.

Recent studies show that cognitive behavioral therapy is not particularly useful in the treatment of young children with OCD, age five and under. Cognitive therapy requires the active participation of the patient, and small children simply aren’t up to the task. For the little ones—as young as three—we recommend medication alone.

The prognosis for OCD is quite good; the overwhelming majority of kids receiving medicine get better. However, their relapse rate is high. A combination of medication and cognitive behavioral therapy makes a relapse less likely once the medicine is stopped. For obvious reasons, the more promptly the disorder is treated, the better the results are likely to be. The longer a child holds onto a symptom, the more the undesirable behavior will be reinforced. A habit can quickly grow into a way of life.

Left untreated, OCD can be virtually crippling to a child. Symptoms will probably increase and grow, until he can’t function properly at school or enjoy time with friends. Scholastically and socially OCD takes its toll on a child, seriously limiting his ability to develop and thrive. Also, not surprisingly, OCD creates serious problems with self-esteem. After all, it’s hard for a kid to feel really good about himself if he thinks he’s going crazy.

PARENTING AND OCD

I walked out into the waiting room of my office one day and saw a teenage girl with her mother. The girl was sitting in a chair with her mouth wide open, and her mother was standing over her, peering into her open mouth. “No, your tooth is smooth,” I could hear the mother saying. “Your tooth is smooth,” she repeated. Then the mother said it a third time. As I learned moments later, the daughter was obsessed with the notion that her teeth were jagged, and she needed to check them often. When the girl was by herself, she used a mirror that she carried with her all the time. When her mother was around, the mother conducted regular checkups.

A 10-year-old boy with a cleanliness obsession takes several showers a day. His mother stands outside the door and hands in fresh towels to the boy, sometimes as many as half a dozen per shower.

Whenever she walks outside, a six-year-old girl has to keep checking the bottom of her shoes to see if she has stepped in something. Several times a block she stops dead in her tracks to take a look. Her increasingly impatient parents have taken to carrying her to and from the school bus and the car.

Many children with OCD involve their parents in their rituals, and parents, eager to keep the peace, may become unwitting accomplices, important players in a child’s disorder. (Alcoholics Anonymous calls such
people “enablers”—people who make it possible and even easy for an alcoholic to live with his disease.) Parents should resist the temptation to make it easier for a child to indulge in rituals. If the treatment of OCD is going to be effective, parents have to help their children
give up the symptoms.
Doling out clean towels to a germ-obsessed kid or carrying a child down the street so that her shoes don’t touch the sidewalk isn’t a solution; chances are it contributes to the problem.

Of course, it’s not always easy for parents—or anyone else, for that matter—to take a hard line with a child obviously in distress, but most families have their limits. Nathan, nine years old, was obsessed with the idea that his family was using too much water and electricity. “That’s too expensive. Turn that off,” he would say to his father, who was using an electric razor to shave, or to his mother, trying to toast frozen waffles for the family’s breakfast. “Don’t take a bath. It wastes water,” he screamed to his older sister. Just before they came in to see me, Nathan had begun walking around the house in the evening and turning off all the lights. When anyone complained, he would usually have a tantrum. His parents knew that Nathan’s behavior was unacceptable, and we worked together to come up with a plan to deal with Nathan’s demands as well as a trial of medication to alleviate his symptoms.

Kids with OCD can be remarkably dislikable, even to their loving parents. “I know this is going to sound cold and awful, but it’s gotten so I really don’t like my son,” a sorrowful mom said to me not long ago. The boy she came to see me about, Lonnie, age ten, was indeed not likely to win any popularity contests. Exceptionally good-looking, with olive skin, green eyes, and dark curly hair, Lonnie was also exceptionally obnoxious. He had a persistent shoulder shrug, but when I asked him about it, he denied it, quite rudely. Throughout our conversation he was fidgety and provocative. When I asked him what he enjoys, he said, “I love sharks. I love violent movies. I love seeing heads being ripped off.” Then he started imitating the voice of Chuckie, the evil doll from the movie
Child’s Play.
His parents told me he fights with them and his siblings all the time, and he’s recently been having trouble at school with both his classmates and his teachers.

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