Bright Futures

Deep brain stimulation (DBS) tames Tourette Syndrome

Until his life-changing brain surgery last year, Sebastian Banuelos, 15, fought a daily battle with severe Tourette syndrome. The nervous system disorder caused him to make sudden uncontrollable sounds (including cursing), or wildly repetitive movements known as tics.

“When he was 6 years old, we started noticing repetitive behaviors like yelling, blinking, hand shaking, things he couldn’t seem to control,” said Sebastian’s mother, Aura Vasquez. “At first, we were told it was a behavior problem, but later Phoenix Children’s diagnosed him with Tourette’s.”

Aura recalls that some days he couldn’t even walk because his ribs kept collapsing. Other days, he couldn’t stop hitting himself in the face. His extreme tics made it impossible for Sebastian to attend school, so he was home-schooled. Stomach-clenching tics led to recurrent burping and vomiting and weeks of hospital treatment for damage to his digestive system.

“When I first met him, he was vomiting so frequently that the stomach acid caused precancerous changes in his esophagus,” said neurologist Michael Kruer, MD, with the Tourette and Tic Disorders Clinic at Phoenix Children’s, part of the Barrow Neurological Institute. “Sebastian’s Tourette’s is one of the worst cases I’ve seen, and I’ve seen hundreds and hundreds of kids.”

As a Tourette Association of America Center of Excellence, the Tourette and Tic Disorders Clinic at Phoenix Children’s combines resources and expertise across multiple medical disciplines, including occupational therapy, physical therapy, psychiatry, psychology, neurology, and neurosurgery to improve diagnosis and care.

In the years following his diagnosis, Sebastian tried countless behavioral therapies and virtually every medication available to get his tics under control. While some treatments worked better than others, eventually the tics would return.

“It was a rollercoaster. We would try a new medication, and for two or three months, we couldn’t even tell he had Tourette’s,” Aura recalled. “Then out of nowhere it seemed like he would have every tic there is.”

Changing the brain’s electrical activity

Given the severity of Sebastian’s tics, he underwent a series of in-depth evaluations. Ultimately, the Complex Tourette’s Clinic team recommended the family meet with David Adelson, MD, chief of Pediatric Neurosurgery at Phoenix Children's, about a surgical procedure called deep brain stimulation (DBS). During this procedure, a neurosurgeon implants electrodes – tiny pieces of metal that carry electrical signals – into the brain. A device called a neurostimulator, implanted just under the skin of the patient’s torso and connected to the electrodes through a thin cable, instructs the device to send specific electrical signals that change the brain’s activity. A pediatric movement disorders neurologist like Dr. Kruer then programs the DBS in a series of steps to personalize the signals for each individual patient’s needs.

In addition to Tourette syndrome, DBS is used to treat Parkinson’s disease, tremors and other movement disorders. However, until a few years ago, it was considered appropriate only for adults.

“There was a time when the belief was that Tourette’s would get better on its own or patients would learn to manage their symptoms. But severe Tourette’s can cause people to feel socially awkward or restrict activities during their crucial identity-forming adolescent years,” said Dr. Kruer. “The recommendation that DBS should not be performed for anyone under 18 has shifted, and for the right candidates, DBS can be life-changing.”

Dr. Adelson performed the surgery in September 2021, and it did indeed change Sebastian’s life. Two months after the procedure, his family noticed that certain major tics were gone, and other tics and twitching had greatly improved. He was paying more attention at school, trying harder and responding more to his teachers.

“We still have to work with him on little things, but he has had huge improvements,” said Aura. “He’s staying in school, his self-esteem is much better, and he’s much more of a typical teenager.”

Dr. Kruer noted that the physical and occupational therapists at the DBS Multidisciplinary Clinic noticed a remarkable change in Sebastian after DBS. “Before the surgery, he would look down and avoid eye contact,” Dr. Kruer said. “When he came back to the clinic, he was just beaming. From the moment he walked into the room, we could all see that he was a different kid. It was really exciting to see.”

Adapting “adult” technologies to treat kids

Dr. Adelson noted that while most medical devices like DBS are focused on the adult population, Sebastian’s condition was severe enough to treat as an adolescent.

“Much of what we do with this type of advanced technology is first developed for adults and has to be translated to children,” Dr. Adelson shared. “Further work and trials need to be done, but I think it is important that we don’t limit kids’ access to a better quality of life in cases like this just because of lack of studies.”

Aura Vasquez said she “110 percent” would recommend DBS surgery and is extremely grateful to Dr. Kruer, Dr. Adelson and the Barrow Neurological Institute team.

“We moved from Yuma to Phoenix four years ago to be closer to Dr. Kruer and Phoenix Children’s, and it’s the best decision I’ve ever made,” she said. “My child would not have this quality of life without them.”