Children with OCD live in constant fear that something terrible will happen, but
with the right treatment they can learn to feel safe again.

Connie Sipos knew that something was wrong when her 8-year-old son, Christopher Golmicz, began stealing hand sanitizer from his second-grade teacher. As it turns out, his germ obsession was just a warm-up for the ordeal to come: A year later, Christopher would stash all his Matchbox cars and action figures inside pillowcases and blankets for fear they'd disappear -- and then he'd hole up in his room for hours to safeguard his toys.

Like approximately one out of every 100 children, Christopher has obsessive-compulsive disorder (OCD). So does his teenage sister, Nicole, who would incessantly count and recount the 200 chickens on their family farm in southwestern Pennsylvania because she was so afraid that the animals would die. Their mother has OCD too. In fact, she used to wash her hands until they bled.

Although people often use the term casually to describe someone who seems overly particular or neat, OCD is actually an anxiety disorder that runs in families and causes the brain to get stuck on fears (obsessions), such as germs or lurking monsters. A child tries to escape these fearful thoughts by engaging in repetitive rituals (compulsions), like excessive hand-washing, walking in and out of a doorway a certain way, or checking over and over to make sure the stove is turned off, because he believes "If I do this, then that bad thing I'm afraid of won't happen." But once the child stops, his anxiety returns even more strongly and he's driven to resume the compulsive behavior. "OCD is like a bully -- it frequently finds things that will upset a child most and then it torments him," explains Andrew Gilbert, M.D., who founded the pediatric OCD program at the University of Pittsburgh Medical Center, where Christopher went when he was 9. (Dr. Gilbert is now in private practice in New York City.)

Children as young as 4 can develop OCD, according to a study at the Bradley Hasbro Children's Research Center, in Providence. Kids ages 4 to 8 with OCD have the same types

of unwanted obsessions about contamination, ordering things, and seeking reassurance that adults do, says researcher Abbe Garcia, Ph.D., assistant professor of psychiatry and human behavior at Brown Medical School. However, a young child may not realize that her thoughts and fears are unrealistic or understand why she is compelled to repeat the ritual behaviors. "She only knows that it gives her a 'just-right feeling,' at least momentarily," says Jerry Bubrick, Ph.D., director of the intensive pediatric obsessive-compulsive spectrum disorders program at the Child Mind Institute, in New York City.

Out of control

The stereotypical OCD sufferer is germ-phobic, but the anxiety disorder can strike in many bizarre ways. At age 11, Nathaniel Ray, of Orlando, would say "I'm sorry" hundreds of times a day. He'd also feel compelled to walk on tiled floors in a certain pattern and line up his chapter books numerically, and perfectly evenly, says his mother, Betty.

Five-year-old Madison Kotch, of Rehoboth, Massachusetts, became obsessed about swallowing things. She would say over and over, "I think I ate the pillow," or "I ate the dog's leg." Her mother, Christen, would try to reason with her: "Do you really think you ate the dog's leg? The dog is over there." But logic didn't work. Some kids have uncharacteristically violent obsessions. One girl was sick with worry that she might accidentally stab her mother with a kitchen knife after she watched her mom chop vegetables in the kitchen, says Eric Storch, Ph.D., program director of the University

of South Florida OCD program, in St. Petersburg. Other kids have intense fears of contaminants or worries about offending God.

These feelings can be terrifying for a child who doesn't understand what's going on in her brain. For Connie Sipos, Christopher's distress was a painful reminder of her own childhood OCD, when she was so afraid of germs that she would swing alone at the playground. OCD often runs in families, but research suggests that the condition is related in part to a dysfunction in an area of the brain called the basal ganglia and may be associated with many things including genetic and environmental factors.

Certainly, a child's behavior can be just as distressing for parents with no personal experience with OCD. Kids with OCD are very driven to repeat their symptoms -- and it can be difficult for parents not to give in to their child's wishes in order to help him feel less anxious. "The rituals make no sense to anyone else, but they make sense to your child," says Betty Ray. "That's what's hard for a parent to grasp."

Kid looking under bed
Credit: Brian Maranan Pineda

Getting help

Although many kids are superstitious or engage in rituals, you should see a mental-health professional if your child has rituals or disturbing thoughts that interfere with daily life or cause him to spend long periods of time alone. He may become so stuck on his obsessions that he withdraws from his friends and family or has trouble going to school. Sadly, it often takes years for a child to get properly diagnosed. Kids with OCD are sometimes misdiagnosed with ADHD because they're preoccupied with their obsessive thoughts at school and it seems like they're not paying attention.

"If you catch OCD early, a child can respond to therapy very quickly," says Dr. Storch. The most effective treatment is a type of cognitive behavioral therapy called exposure and response prevention, in which kids gradually face their fears in small steps and learn to resist the urge to do their ritual. (It's important to work with a therapist who has experience treating OCD; traditional "talk therapy" can actually make a child's symptoms worse.)

A child may benefit from an intensive program with therapy several hours a day. During Christopher's 12 weeks at the University of Pittsburgh program, he gradually learned to stop his compulsive toy hoarding and get over his fear that the toys would dent or break. First he practiced talking about opening the boxes of his toy cars, then he carried his toys in a grocery bag, and then he removed his cars from the bag for a few minutes. Eventually, he let other kids handle them.

Dr. Gilbert explains to his young patients that OCD is playing tricks on their mind. "We are going to be a team and boss back the OCD," he says. He asked Christopher to draw a picture of the OCD monster, which the boy portrayed as an older version of himself. "You stinky OCD. You stay away from me," he wrote. In therapy, he practiced bossing back the OCD by not doing the rituals that it demanded from him. At first this made him anxious, but his anxiety soon faded.

When Madison began therapy at the Bradley Hasbro Research Center at age 5, she was obsessed about avoiding bones and dirt in her food. First she watched her mother pick meat off the bone, then she tried taking the meat off the bone herself, and finally she ate chicken directly off the bone. For her graduation meal, soon after her sixth birthday, she ate chicken wings.

Children who have mild or moderate OCD can often be helped by cognitive-behavioral therapy alone, but kids with more severe OCD benefit from taking an SSRI (selective serotonin reuptake inhibitor) medication such as Zoloft or Prozac in addition to therapy. The medications can reduce OCD and anxiety symptoms and may help the child participate more effectively in therapy. Although many children who go through therapy overcome their OCD, about 40 percent of kids will battle flare-ups for the rest of their life, says Dr. Gilbert.

Therapists also coach parents about how to help their child "boss back" the OCD at home and to stop enabling the child's rituals -- by no longer buying extra cleaning products, for example, or following strict rules about where to place certain objects. "The goal is to get the family functioning normally again so anxiety is not running their household," says Jeff Szymanski, Ph.D., executive director of the International OCD Foundation, in Boston.

Connie Sipos was grateful to connect through Christopher's program with other moms and dads who understand the turmoil of OCD. Most of all, she is relieved that both of her children improved with therapy, which had been unavailable to her as a child. Today, Christopher plays with friends instead of hiding in his room with toys. "He used to be a scared little mouse," Sipos says. "It is so wonderful to have my happy boy back."

Originally published in the May 2014 issue of Parents magazine.

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