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Sean Curzan, now 12, vividly remembers the fourth grade.
He already had numerous tics — sudden, repetitive movements or sounds, which were difficult for him to control. Sean would flip his hair, bounce his leg, roll his eyes, and twitch his nose.
When he turned 10, it was no longer just tics that interfered with his life; his school work started to become especially difficult.
“Imperfections are my triggers,” Sean told TODAY.com. “I was not accomplishing my work. I spent hours trying to catch up and I would get upset if something wasn’t just right.”
Once Sean’s struggles in school started to intensify his parents took him to a doctor where he was diagnosed with Obsessive Compulsive Disorder (OCD). OCD is defined by experts as the recurrence of distressing thoughts or images that produce extreme anxiety.
In order to dismiss the thoughts and images, individuals with the disorder feel compelled to engage in repetitive and compulsive behaviors that ultimately interfere with their daily lives. Specifically, Sean suffers from perfectionist OCD.
“Sean is a very smart kid and suddenly he couldn’t complete his assignments…he would spend hours looking up words in a thesaurus and he would compare them to make sure he found the right word and that it sounded just right,” Sean’s father, Mark Curzan explained. By day, Curzan is an orthopedic surgeon.
Sean’s mother, Tracy who is an Emergency Room physician, adds “If he got a 99 instead of a 100 he would get angry.”
Sean’s OCD got worse and worse.
His parents really knew something was wrong after Sean wrote a 24-page biography on John Glenn — the first American to orbit the Earth. The teacher had only requested a two page paper. Tracy remembers the teacher giving Sean an A+ without even reading the biography.
Sean’s parents frantically tried to find a treatment option that worked for him.
He did not respond well to the typical, first line of OCD treatment, which is a type of cognitive behavioral therapy called Exposure Response Prevention therapy (ERP). Sean says that ERP was too tough for him, too much of an exposure. ERP gradually conditions patients to confront the triggers of their obsessive behavior for increasingly long periods of time, without acting upon them.
“While ERP usually works better than medications for treating OCD, drug treatment and ERP together work best in severe cases,” explains Eric Storch, PhD, expert in adolescent and teen OCD at the University of South Florida.
In Sean’s case, ERP did not work so he was placed on a regimen of drug therapy with selective serotonin reuptake inhibitors (SSRIs), which are types of antidepressants. SSRIs are viewed as all equally effective in treating OCD by doctors, but individual patients often respond better to one than another, and it takes some trial and error to determine which one is best.
For Sean, this trial and error almost cost him his life.
“About one year ago we found Sean on the roof of our home about to jump,” Tracy says.
Sean’s father explains that approximately 4% of people on SSRIs have suicide ideation and Sean was in that 4%. “He was one of them,” he says. “It was surreal seeing him spiral....I had to pinch myself.”
“We weren’t sure Sean would make it to his 12th birthday. Things had gotten so bad,” Tracy said.
Sean’s younger sister, Claire, who is like a caretaker to him adds, “I saw him on the roof and my mom told me to go downstairs. It is scary to know your brother is having these thoughts as a kid…I didn’t know what was going on. No one told me anything.”
Right before the incident on the roof, Sean was switched to a new regimen of SSRIs by his doctor. The previous regimen was helping him, but not enough so it was time for a new therapy.
Thinking back on that horrific day, Sean says, “My mind just freaked out. I didn’t want to live like this. I think I freaked because the medications just weren’t working and I was back to square one; I was re-exposed to all of my triggers. I had been feeling better and then this new course of treatment didn’t do anything.”
Sean went into intensive therapy after his suicide attempt. He says that being in a hospital really gave him the motivation he needed for therapy.
One of Tracy’s biggest takeaways from the incident was that people must be engaged earlier on. “It took a hospitalization, my son almost jumping off the roof for him to really start to get the help and the attention he needed,” she says.
Though Sean was able to get a relatively quick diagnosis of OCD when he initially displayed symptoms, it took many months for him to finally get the right course of treatment.
“One of my goals is to disseminate that there are good treatments available. It is a tragedy so few kids have access to treatments,” explains Lisa Coyne, PhD, program director at the Child and Adolescent OCD Institute at McLean Hospital. “OCD does not need to get that bad in a kid. There is care, we can do this and as doctors in this field we need to raise more awareness.”
For starters, people need to know that OCD starts in childhood. And, according to Dr. Storch, as many as 80% of people with OCD symptoms experience onset during childhood.
Since the roof incident, Tracy says that she and Mark have seen great progress in Sean. “He is doing awesome. We see him smile now,” she says. And Claire adds, “We see the light at the end of the tunnel. Sean seems a lot happier.”
Experts explain that OCD is a family affair and that it is essential to include family during therapy. “OCD treatment is not a style of treatment where you just drop off your kid and pick them up later. It is a family problem and all members of the family need to be engaged,” Dr. Storch says.
For the Curzan family, this couldn’t be more true.
“This is a family experience. We are doing this as a team,” Mark says.
Mark and Tracy brought the whole family to the International OCD Conference in Boston, MA this year knowing that it would be beneficial for Sean, Claire and their youngest daughter, Kate, to see other kids who have OCD as well.
On opening night of the conference, the three kids even rapped at orientation singing a song they wrote titled, ‘OCD Get Out of Me.’
To the Curzan family, the OCD Conference wrapped up a very tough year and they are hopeful knowing that Sean is doing well, getting better and better by the day.
“My OCD will always linger, but I am learning to live with it,” Sean explains.
“I have grown over the last year,” Sean says. “The word perfect has a new meaning. It means to enjoy and to do something to the best of your ability. It doesn’t hold me back like it used to.”