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 radical treatment for the condition, and so far, his life has improved.
As he prepared for brain surgery, 17-year-old Callum deQuevedo hoped for a chance at a normal life, a life that would be beyond control.has had on him.
Callum has an incredibly bad case of Tourette’s, a neurological disorder that can cause tics ranging from repetitive blinking to uncontrollable vocal and physical outbursts. Her ticks were so bad that she sometimes felt like she 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 below his clavicle, was his last best hope of reducing, or eliminating, the movements. and involuntary sounds. Tourette’s syndrome makes him do.
The surgical procedure has helped people with Parkinson’s disease, but has not yet been 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 said he couldn’t breathe. She thought he might be coming down on something.
“So the next day, she sent him to school and the nurse called and said, ‘Listen, he’s really struggling to breathe,'” Dawn said. “So every day that week the nurse called and said, ‘Something’s not right.’ No one knew he was a tic.”
“We went to an otolaryngologist,” he 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 the Children’s Hospital of Philadelphia.”
Callum’s tics included yelling, swearing, and hitting his head. She also experienced head shaking, face crackling, and growling. And sometimes in the middle of the night she would get up and scream.
His worst episodes landed him in the emergency room.
“Even after I was diagnosed, I struggled with mental health and actually attempted suicide at one point,” Callum said.
Dawn estimates that they saw more than 30 doctors over the seven months before someone diagnosed their son with Tourette syndrome.
“It’s really hard when you have a child this age who is eager to do things in life,” she said. “And you’re saying, he’s the father saying, ‘I don’t know if you can.'”
How Callum came to be one of the few people with Tourette’s eligible for surgery was a tribute to his parents’ persistence in getting help and getting the insurance company on board. It was also a tribute to Dr. Joohi Jimenez-Shahed, a neurologist and leading Tourette expert at New York’s Mount Sinai West.
It’s not unusual for Tourette’s syndrome to go undiagnosed, but after seeing 30 different doctors, doctors at Mount Sinai offered a promising treatment.
“Callum was one of the few people who needed additional treatment,” said Dr. Panov. “Many people can hide his tics and deal with them. But unfortunately he, as smart as he is, is really stopping his life.”
The procedure Dr. Panov performed in December involved drilling two small holes in Callum’s skull to insert tiny wires into his brain. An MRI scanner guided surgeons and provided real-time images of her brain to help find where the brain might be most receptive for successful treatment.
CBS News was there for the proceedings, marking the first time journalists had been allowed to observe and record it.
“The brain is smarter than anything we can imagine, and the brain can get this help from this device and start learning along with the device. So, month after month, Caleb can show improvement,” Dr. Panov said. .
Callum’s condition did not show immediate improvement and was not expected to. During the holidays, her skull first had to heal and then the staples had to be removed.
With this done, Dr. Jimenez-Shahed slowly turned on a neurostimulator that sends a current to Callum’s head. Her hope was that she would calm down and regain control of herself. Over the next hour and a half, the doctor adjusted the levels, and already there was cause for optimism.
“I felt like this is the best I’ve felt in a long time,” Callum said at the time.
Now he can adjust the neurostimulator levels himself using an app.
“I feel more relaxed now,” he said. “It’s nice that I don’t have to constantly move around to distract myself or stop the tics. I can sit at home and watch TV without worrying about yelling, hitting myself, punching myself, or the like.”
Callum believes that his tics have been reduced by 70% since the device was implanted in his brain. He now talks less about his tics and more about his dreams.
In the end, his parents’ love, and science, gave Callum an opportunity he could have easily missed.