Dylan Walks Again Thanks to Deep Brain Stimulation (DBS)
Marta can easily recall the difficult time she and her family were having when they first visited Lurie Children’s in May of 2021. Her son Dylan, then 7, had been progressively losing his ability to walk and move. The otherwise typical kid who loves playing his Legos and action figures kept falling while walking and could barely dress himself anymore.
“It was terrifying and so confusing,” Marta, of suburban Chicago, recalls. “He was just not himself.”
Scans and tests from doctors at hospitals closer to their suburban Chicago home could not find a conclusive diagnosis for Dylan’s problems with walking and moving. Dylan endured physical therapy to try and combat the regression, and without a diagnosis, he was ultimately fitted for a custom wheelchair.
Once referred to Lurie Children’s genetics experts, Dylan was able to undergo a complex type of genetic testing called whole exome sequencing and whole genome sequencing that finally brought the family some answers. Dylan had a genetic condition called DYT1 early onset dystonia, a type of movement disorder in which the muscles receive incorrect signals from the brain. This can cause muscles to contract and twist uncontrollably, and sometimes painfully, and typically presents in children between 9 and 12 years old.
“I was thankful to get the diagnosis and know we could do something about it,” Marta said.
The family’s referral to Lurie Children’s had auspicious timing. The hospital was about to welcome a new addition to its neurosurgical team, Dr. Jeffrey Raskin, who is an expert in a field known as functional neurosurgery, including deep brain stimulation. Deep Brain Stimulation, or DBS, is a type of neurosurgery that can help correct the uncontrolled movements caused by dystonia, and Dylan was an ideal candidate for the procedure. It involves using a very accurate cranial robot to implant permanent electrodes deep in the brain that send electric impulses to the specific malfunctioning parts of the brain, stopping the abnormal signals that lead to Dylan’s symptoms.
Placing the electrodes and generator is just half of the treatment; the electrodes must also be programmed appropriately to communicate with the brain. Dr. Joanna Blackburn, head of pediatric movement disorders, is the pediatric neurologist at Lurie Children’s Hospital who works with Northwestern neurologists to program the DBS. Dr. Blackburn adjusts the electrical dosing using a Bluetooth machine that communicates painlessly and wirelessly with the implanted generator.
Today, it’s been about eight months since the procedure, and Marta reports that Dylan, now 9, is “doing amazing.” He recently completed occupational therapy and continues weekly physical therapy sessions at Marianjoy Rehabilitation Hospital in Wheaton, close to their Glen Ellyn home. The therapies are necessary to help Dylan retrain his muscles and regain the strength he lost with the onset of his condition. He can once again feed and dress himself and is walking on his own again, no longer needing a wheelchair.
“He is almost back to his old self,” Marta said. “It was a really tough situation for a good amount of time. But he is a very resilient, happy and funny kid.”
Marta said the Lurie Children’s ensured she and her whole family, not just Dylan, heal following a challenging period in their lives.
“They comforted me and Dylan during a very difficult time and really took time to get to know us as a family to work towards a goal that fit our individual needs,” she said.