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David Baxter PhD

Late Founder
Finding Hope Amid Despair in Treating Compulsive Disorders
March 21, 2000

In hindsight, Debbie McDowell now realizes that the quirks and idiosyncrasies her son Jake displayed when he was very young were the first warnings of an illness that would eventually debilitate her child and test her own mettle as a parent.

Jake would wear only shoes with Velcro closures that he could pull tight and his pants had to have skin-tight legs. Little kids do bizarre things, she told herself. What's the harm in indulging him?

But when Jake was in second grade, a classmate was hospitalized with a heart infection and required a heart transplant, all of which was patiently explained to pupils by a well-intentioned teacher. ''My kid heard 'germ,' 'infection,' and 'heart,' and O.C.D. was born,'' said Mrs. McDowell, of Waltham, Mass.

Obsessive-compulsive disorder is a biologically based psychiatric disorder characterized by persistent, distressing thoughts or images and accompanying ritual behaviors or mental acts that a person is driven to perform. For Jake McDowell, germs were the initial obsession and hand-washing the compulsion, but his symptoms soon expanded and grew progressively worse. He feared contamination from pesticides on the lawn and household cleaners. And then he could not put on his socks.

''I would sit on the floor with him with 25 pairs of the same socks trying to find a pair that would go on,'' Mrs. McDowell recalled. ''He said it felt like they had rocks in them. And finally he couldn't go to school. At 8 1/2, Jake thought he was nuts.''

It took a year and a half before Jake's illness was ultimately diagnosed as obsessive-compulsive disorder, a period during which the McDowells endured dead-end encounters with a psychologist who suggested the problem was that Jake's father traveled too much. School officials, noting that Jake had seemed depressed and suspected child abuse, reported the McDowells to state officials. Although no investigation occurred, the episode was wrenching and moved Jake no closer to help. Eventually, Mrs. McDowell found a psychologist who gave Jake's problem a name and gave the family hope.

''It was like the weight of the world was lifted from his shoulders,'' Mrs. McDowell said. Behavior therapy in combination with medication very quickly improved Jake's symptoms. Today Jake is 13, and although his condition will not be cured, ''he is living a very normal life,'' his mother said.

Not all O.C.D. stories have such a happy resolution. But the McDowells' tale proves both how far medical science has come in understanding and treating the disorder, and how much remains to be done.

Just 20 years ago, the condition was considered a rare anxiety disorder, affecting no more than 0.5 percent of the population. Now it is widely believed that 2 to 3 percent of the population and 1 percent of children meet the criteria for the disorder. More recent research indicates that among adults with the disorder, onset was before age 15. Yet it can go undiagnosed for many years, in part because its sufferers are motivated by fear and shame to hide their symptoms. For adults, the average time between the first appearance of symptoms and diagnosis is 17 years.

''It used to be thought that if you saw two or three of these kids in a practice in a lifetime, that would be a lot,'' said Dr. John March, director of the program in Child and Adolescent Anxiety Disorders at Duke University Medical Center. ''Now it appears the prevalence rate is probably on the order of 1 in 200 children. That's two or three kids in every elementary school. It is about the same prevalence rate as juvenile diabetes.''

Dr. March credits pioneering research by Dr. Judith L. Rapoport at the National Institute of Mental Health and her 1989 book, ''The Boy Who Couldn't Stop Washing'' (New American Library), for increasing the recognition of the disorder in children.

Researchers have yet to identify the cause for the disorder, but brain imaging work by Dr. Lewis R. Baxter Jr., a neuropsychiatric researcher at the University of California at Los Angeles, has located the likely site of the problem in the basal ganglia, an area of the brain that is connected to impulse-carrying circuits. One of these circuits, involving the orbital frontal cortical thalamic regions of the brain, is supposed to screen incoming sensations and thoughts and determine which are important.

Chemical imbalance in this circuitry may cause a ''mental hiccup,'' in which thoughts or actions are repeatedly incessantly. But what causes the imbalance affecting that circuit is still not clear, said Dr. Susan Swedo, head of behavioral pediatrics at the National Institute of Mental Health. ''The circuit is a loop, like a string of Christmas tree lights,'' she said. ''When one goes out, they all go out, so you can't tell exactly where the problem originates.''

But researchers do know that stress can trigger the disorder, as can strokes. Dr. Swedo is also involved in long-term research into common strep infections in children as a trigger for the disorder, a syndrome called Pandas for pediatric autoimmune neuropyschiatric disorders associated with strep infections. Pandas cases represent a small subset of all children who have O.C.D.

More significant is the role of genetics. One in four children with the disorder has a first-degree relative with a similar condition or with a tic disorder.

For one girl from upstate New York, genetics is the likely cause for her disorder. But it was not until her symptoms surfaced at age 5 that her mother, Arlene, made the connection to her husband's own idiosyncratic behaviors.

''He's a hoarder,'' said Arlene, who did not want her last name used. ''No one meeting him would know, although you might think he is slightly compulsive.'' Arlene's daughter's condition worsened at she got older, manifesting as tantrums and then a compulsion to lick -- the garage floor, electrical outlets, a gym mat at school. Homework was a frustrating exercise and the girl's grades reflected her difficulties.

When the girl was 8, Arlene took her to a psychotherapist and then a psychiatrist, and neither helped. The psychiatrist even made things worse when he prescribed Paxil, an anti-depressant, which gave the girl symptoms of attention deficit disorder.

At her wits' end, Arlene went to Marni Jaffer, a psychiatric nurse at the O.C.D. and Anxiety Disorder Service for Children and Adolescents at New York Presbyterian Medical Center in White Plains. ''The minute Marni met her she said, 'She's in distress, but don't worry, this is the beginning of the end,' '' Arlene recalled.

Ms. Jaffer began a widely used approach for anxiety disorders, called cognitive behavior therapy, that lasted for six months, beginning with three sessions weekly. The girl also began taking Luvox, one of several antidepressants approved for treating children with the disorder.In less than a year, the girl was much improved. She was getting A's and B's in school and taking dance classes. Now 11, she goes back to Ms. Jaffer for occasional booster therapy sessions, and she still takes Luvox.

But, Arlene said, ''She is the child I always thought she could be.'' Her husband is a different story. He had a hard time acknowledging his condition and seeking help. ''He's doing much better but he's not willing to talk about it. He sees it as a stigma,'' Arlene said.

Early diagnosis and treatment is especially critical for children for several reasons, Dr. March said. Left untreated, the disorder can interfere with children's growth as the rituals come to dominate their lives, crowding out other activities.

The disorder also derails a child's normal developmental growth, Dr. March said.

Research also suggests that early treatment could prevent depression and other conditions that often exist with the disorder in adults.

In just the last decade, treatments for children with the disorder have evolved along with understanding of the disease. The class of anti-depressants known as selective serotonin reuptake inhibitors (S.S.R.I.'s), of which fluoxetine (Prozac) is the best known, is one tool doctors use to bring the symptoms under control. Three of them -- Anafranil, Zoloft and Luvox -- are approved by the federal Food and Drug Administration for treating children with the disorder. But research done by Dr. March and others suggests that for many children, the behavior therapy that helped Jake McDowell and the young girl with their disorders, can have equally effective and longer-lasting results than medication alone.

At the O.C.D. and Anxiety Disorder Service for Children and Adolescents, Ms. Jaffer and the clinic's founder, Dr. Flemming Graae, use exposure and response-prevention therapy, a form of cognitive behavior therapy that forces patients to confront the objects of their obsession while preventing them from acting out their rituals.

So children obsessed with germs would have to touch or drink from dirty glasses, for example, and then not be permitted to wash their hands. ''What you're doing,'' Ms. Jaffer said, ''is putting them in the situation that triggers the symptoms and then showing them that nothing bad will happen, and that they can get relief.''

Another proponent of exposure response-prevention therapy, Dr. March has published a manual for practitioners and parents, ''O.C.D. in Children and Adolescents'' (The Guilford Press), which maps out a treatment through cognitive behavior therapy, or C.B.T. Among his patients, Dr. March said he had an 80 percent success rate in diminishing symptoms. ''Fifteen years ago, if you were a kid with O.C.D., you were up a creek without a paddle,'' he said. ''Now, if you can get access to C.B.T., once you get well, you stay well. You may need boosters but the long-term prognosis is good.''
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