Jordan’s “brand” of OCD falls into the “just right” category. “I need to have everything feel just right,” he said. “When it’s not, it’s the most excruciating thing imaginable. It’s a feeling that just takes over you. You can never be happy again. You can’t go on. Everything is on the line.”
Every day, every hour, every minute. “Every move has to be meticulous.”
Jordan has felt this way, he says, “as long as I can remember.” The worries can come when he least expects them, and the rituals change all the time. Last year the 17-year-old took part in a clinical trial at the New York State Psychiatric Institute, which is on Manhattan’s Upper West Side, but he found only partial relief. Hoping to get better control of his symptoms, he traveled to Wisconsin in January for a weeks-long inpatient program.
“People use OCD as a catchphrase: ‘That’s so OCD,’ ” said Jordan’s mother, Meg. “But it’s very different from that. I know how much my son suffers.”
No one is sure why the disorder develops, although there are clearly genetic components with some people. Studies suggest that early-onset OCD is the most hereditable. Often it begins with what may seem like childhood tics. When Jordan was 4, he would have a meltdown if his sleeves didn’t reach all the way to his wrist. When he was 7, he had to constantly rearrange the items on his desk at school. At 12, he found it impossible to stop asking his teachers if he was doing the right thing.
“The brain, as it is developing, has little hiccups,” Rynn explained. “Everybody has their own trajectory. Most kids, the hiccups smooth out and pass, but for a small, significant subset of others, they do not.”
There are two traditional treatments for OCD, often given together: cognitive behavioral therapy and medication, with drugs chiefly targeting the neurotransmitter serotonin. In combination, these treatments alleviate all but minimal symptoms in up to 40 percent of adults. To have all symptoms disappear is rare.
Serotonin has long been the diva of human brain chemicals and, along with dopamine, has hogged the spotlight as researchers looked for new psychiatric treatments. But recently, scientists turned their attention to the amino acid glutamate. Some think this other neurotransmitter could be one of the chief culprits in OCD.
An accidental discovery in 2007 proved to be the breakthrough. Researchers at Duke University Medical Center had been examining how certain proteins provide a kind of infrastructure for the brain’s neurons. When they genetically eliminated the Sapap3 protein from the OCD loop, the mice being studied turned anxious and exhibited obsessive-compulsive grooming behavior.
Sapap3 assists in glutamate’s modulation after it carries a signal between neurons. Without the protein, the nervous rodents’ cleaned themselves so often and so vigorously they developed bloody facial sores.