Archive for cerebral palsy
The journey to a treatment for hereditary spastic paraplegia
In 2016, Darius Ebrahimi-Fakhari, MD, PhD, a neurology fellow at Boston Children’s Hospital, met two little girls with spasticity and decreased muscle tone in their legs, which affected their walking. Both girls, Robbie Edwards and Molly Duffy, had been diagnosed with hereditary spastic paraplegia (HSP), a group of more than 80 genetic conditions. Untreated, the ... Read More about The journey to a treatment for hereditary spastic paraplegia
Cerebral palsy hasn’t stopped Irvin from living large
Irvin, now 18, became fascinated with sports mascots when he was a little kid. What did they do, and could he do that too? Anytime he had an appointment at the Cerebral Palsy and Spasticity Center at Boston Children’s Hospital, he and his mother would stop by Fenway Park to visit Wally, mascot of the ... Read More about Cerebral palsy hasn’t stopped Irvin from living large
Lacrosse, cerebral palsy, and leadership: Luke’s story
When he returned to lacrosse after surgery on his left leg, Luke Kilfoyle wasn’t nervous. In the five and a half months since his surgery, he’d worn a cast, gone to school in a wheelchair, used a walker, then a cane and ankle-foot orthosis (AFO). He’d spent hours in physical therapy and the gym. By ... Read More about Lacrosse, cerebral palsy, and leadership: Luke’s story
A cerebral palsy journey lands in Boston: Ashlyn’s hip surgery
Eleven-year-old Ashlyn’s parents describe her as spicy, strong willed, and determined. Those qualities have served her well through a medical journey that started soon after she was born with cerebral palsy (CP). Ashlyn has had multiple operations to manage the symptoms of CP, but when it came to the question of hip surgery, her parents ... Read More about A cerebral palsy journey lands in Boston: Ashlyn’s hip surgery
Research offers guidance on genetic testing for cerebral palsy
A recent meta-analysis confirms what a small study at Boston Children’s found last year: About 1 in 4 children with cerebral palsy (CP) who had DNA testing had genetic variants likely to have caused or contributed to their condition. With the new data, the researchers have expanded the traditional view of the condition and offer ... Read More about Research offers guidance on genetic testing for cerebral palsy
Research 2022: Tackling disease in new ways
Researchers across Boston Children’s spent 2022 imagining new solutions to old challenges in health and medicine, opening the door to brand-new treatments. Here are a few areas where research is poised to make a difference in children’s — and even adults’ — lives. Rethinking disease through genetics Genetic sequencing is becoming a fundamental tool for discovering ... Read More about Research 2022: Tackling disease in new ways
Kids with special health care needs can take small steps toward dental visits
This is the second of a two-part series offering dental advice to the parents of children with special health care needs. A visit to the dentist can be an overwhelming experience for children with special health care needs. Like many people, they might feel uncomfortable with dental picks and drills. Or, favoring the rhythm of ... Read More about Kids with special health care needs can take small steps toward dental visits
Parents: Start dental care early for children with special health care needs
This is the first of a two-part series offering dental tips to the parents of children with special health care needs. The texture of a toothbrush’s bristles can be enough to make dental hygiene an uncomfortable undertaking for children with special health care needs. And because children with autism spectrum disorders, cerebral palsy, Down syndrome, and other conditions are ... Read More about Parents: Start dental care early for children with special health care needs
Rethinking the origins of cerebral palsy
Cerebral palsy (CP) has widely been viewed as the result of perinatal oxygen deprivation or other birth-related factors like prematurity. For many children, this is true. But new work from Boston Children’s finds that up to 1 in 4 have an underlying genetic condition with the potential to change the approach to their care. Findings ... Read More about Rethinking the origins of cerebral palsy
What it’s like to have SDR surgery: Scarlet’s story
Scarlet is 9 years old. When she was 7, she underwent selective dorsal rhizotomy (SDR), a procedure in which a surgeon cuts certain nerves that may contribute to leg spasticity related to cerebral palsy. We talked with Scarlet and her parents, Darcie and Tyler, about their experience in the Cerebral Palsy and Spasticity Center at ... Read More about What it’s like to have SDR surgery: Scarlet’s story