(BOSTON) — Cameron Lucas-Pelletier was only a toddler when his parents noticed he had a nervous tic, “fluffing” his hair with an “unsettled look,” and began repetitive touching.
But his anxiety quickly escalated as he developed an irrational fear of scissors, afraid he would hurt himself, and he wondered at bedtime whether an earthquake or a fire would destroy his house.
“It got bad fast. He wasn’t his normal self,” mom Jiliane Lucas of Foxboro, Massachusetts, said. “In school, he would not hold a pencil and it hindered his handwriting. He was afraid to see his friends hold a pencil because he thought they’d get injured. Imagine being in a classroom with 30 kids. It was so overwhelming.”
Cameron, now 6, was soon diagnosed with obsessive-compulsive disorder, or OCD, which affects the brain and behavior, causing severe anxiety that gets in the way of normal living and thinking.
But today, with early diagnosis and treatment, he is overcoming his disease, and will serve Saturday as one of the grand marshals for the second annual 1 Million Steps 4 OCD 5K Walk in Boston, which will bring together advocates, families and medical professionals who want to raise awareness about obsessive-compulsive disorder.
“He is really good,” Lucas, 29, told ABC News. “The past two years have been a whirlwind, but we are dealing with it. He has made amazing progress and is now learning to embrace it. …It has been quite humbling to look back over the past two years when he was afraid of life, of himself and his own thoughts. Now he wants to help others.”
The OCD walk was inspired by advocate Denis Asselin, who walked one million steps from Philadelphia to Boston as a memorial to his son, who had OCD-related body dysmorphic disorder, a cruel condition that made him magnify every imperfection he imagined on his face. He had suffered from the disorder since the age of 11 and killed himself at 24.
As many as 20 percent of all children in the United States suffer from a mental disorder, about 7 to 12 million and the rate is rising, according to the Centers for Disease Control. OCD affects an estimated half million children and 2 to 3 million adults in the United States, it says.
OCD typically starts in early adolescence or in young adults, but it can occur at any age, preying on a young child’s worst fears and anxieties, according to the Boston-based International OCD Foundation, which is sponsoring this weekend’s parade. Last year, 300 participants raised $75,000.
“Most people have no idea that OCD starts in childhood,” said Jeff Szymanski, the foundation’s executive director. “Without early and effective treatment, OCD can have a devastating effect on these young lives.”
But he said that while developing OCD at age 4 is “not unheard of, it’s not the norm.”
Often, there is a genetic component. Lucas, Cameron’s mom, said she, too, has suffered from OCD since childhood, but had no idea her anxious and intrusive thoughts and irrational fears had a name.
“There is something like a 1 in 4 chance of some sort of OCD-like anxiety passed on to a kid genetically,” Szymanski said. “But your subtype doesn’t get passed on. What gets passed on is your wiring. But just because you have the wiring, doesn’t mean you are going to develop it. Environment, parenting and experiences shape it.”
Lucas, who worked as a behavioral therapist and was taking care of Cameron’s 3-month-old sister when the symptoms began, was quick to notice her son’s irrational thoughts. “I saw it coming before anyone else did,” she said. “I was crying out for help, for somebody to tell me I am not crazy.”
Cameron had to always know “Why?” or “What if, Mommy?” she said. He had difficulty at recess and felt stigmatized socially.
While OCD cannot be cured, it can be managed and his mother says Cameron is proof that OCD doesn’t mean the end of a happy childhood.
Cameron is on a low dose of antidepressant medication and, in therapy, he is learning to control his irrational fears, Lucas said.
“I say to him, ‘Cameron, how likely is it that the house will burn down?’” Lucas said.
“’Probably not, and if it did, we would save you, then go next door and call the fire department,'” she tells him. “We think out loud together and it gives him a sense of security.”
Experts like Szymanski say exposure therapy is the standard of care, but when a child is resistant to that, medications are considered “as a back-up therapy.”
“At first I felt so helpless, but he is doing better because we have been proactive and found a group,” she said. “We do it together and he enjoys knowing he is helping others.”
But now, with help and Cameron’s new activism, things are getting better. “I say, ‘You have brown hair, brown eyes and you have OCD.”
This year, walk organizers have made Cameron a superhero cape with his nickname: “Captain Never Give Up.”
He participated in the 2013 OCD walk and “loved it,” according to his mother.
“I was crying in tears,” she said after last year’s experience. “He found comfort, like a warm hug. ‘You understand me and don’t judge me or my parents — we are like the rest of the world.’”
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