This is a story about overcoming obstacles. It is also personal. I was diagnosed with Tourette syndrome at the age of six.
My team and I followed a 17-year-old from Pennsylvania as he underwent a radical treatment for the condition, and so far, it has changed his life for the better.
As he prepared for brain surgery, 17-year-old Callum deQuevedo hoped for a chance at a normal life — a life that would overcome the griphas had on him.
Callum has an incredibly severe case of Tourette’s, a neurological disorder that can cause tics ranging from repetitive eye blinking to uncontrollable vocal — and physical — outbursts. His ticks were so bad that sometimes he felt like he was choking.
Callum’s surgeon, Dr. Ted Panov at Mount Sinai West in New York, told him that inserting wires into his brain, connected to a neurostimulator under his collar bone, was his last, best hope of reducing — or eliminating — the involuntary movements and sounds Tourette’s causes him to make.
The surgical procedure has helped people with Parkinson’s disease, but has yet to be approved by the FDA to treat Tourette syndrome.
Calum’s condition became uncontrollable three years ago at a high school track meet, when he was 14. His mother, Dawn deQuevedo, picked him up, and he said he couldn’t breathe. She thought he might be coming down with something.
“So the next day, sent him off to school and the nurse calls and says, ‘Listen, he really is struggling to breathe,'” Dawn said. “So, every day that week the nurse called and said, ‘Something’s not right.’ Nobody knew it was a tic.”
“We went to an ENT,” she said. “And they said, ‘Well, There’s something called vocal cord dysfunction.’ And they sent us to a speech therapist … He said, ‘You know, this is beyond my expertise.’ And he sent us to Children’s Hospital of Philadelphia.”
Callum’s tics included screaming, cursing and hitting himself in the head. He also experienced head jerking, face crunching and grunting. And sometimes in the middle of the night, he would be up, screaming.
His worst episodes led him to the emergency room.
“Even after I got diagnosed I struggled with mental health and I actually tried to kill myself at one point,” Callum said.
Dawn estimates they saw over 30 doctors over seven months before anyone diagnosed her son with Tourette syndrome.
“It’s really hard when you have a kid this age who’s really looking forward to doing things in life,” she said. “And you’re saying — it’s the parent saying, ‘I don’t know if you can.'”
How Callum got to be one of few people with Tourette’s eligible for the surgery was every bit a tribute to his parents’ persistence to get help — and get the insurance company on board. It was also a tribute to Dr. Joohi Jimenez-Shahed, a neurologist and leading expert on Tourette’s at New York’s Mount Sinai West.
It is not unusual for Tourette’s syndrome to go undiagnosed, but after visiting 30 different doctors, Mount Sinai doctors offered a promising treatment.
“Callum was one of the few folks to whom extra treatment is needed,” said Dr. Panov. “A lot of people out there are able to cover up for their tics and are able to deal with it. But unfortunately him, as bright as he is, it’s really stopping his life.”
The procedure Dr. Panov performed in December involved drilling two small holes into Callum’s skull to insert tiny wires into his brain. Guiding the surgeons was an MRI scanner providing real-time images of his brain to help find where the brain could be most receptive for successful treatment.
CBS News was there for the procedure, marking the first time journalists were allowed to observe and record it.
“The brain is smarter than anything that we can ever imagine, and the brain is able to get this help from this device and start learning together with the device. So months after months, Caleb can show improvement,” said Dr. Panov.
Callum’s condition did not show an immediate improvement, and was not expected to. Over the holidays, his skull had to first heal, and then staples needed to be removed.
Once that was done, Dr. Jimenez-Shahed slowly started a neurostimulator that sends a current to Callum’s head. The hope was he would become calmer and gain control. Over the next hour and a half, the doctor adjusted the levels, and there was already reason for optimism.
“I just felt like this is the best I’ve felt in a long time,” Callum said in that moment.
Now, he is able to adjust the neurostimulator levels himself, using an app.
“I feel more relaxed now,” he said. “It’s nice that I don’t have to be moving constantly to keep myself distracted or to stop the tics. I can sit at my house and watch TV without worrying about screaming, or hitting myself, or punching or anything like that.”
Callum believes his tics have been reduced 70% since the device was implanted in his brain. He’s now talking less about his tics, and more about his dreams.
In the end, love from his parents — and science — gave Callum a chance he could have easily missed.