New Faculty Focusing on Epilepsy and Neuromuscular Disorders

Date: November 28, 2014

Most parents expect their baby to grow into a normal, thriving adult. Unfortunately, that’s not always the case—any number of diseases and disorders, including neurological problems that often aren’t immediately apparent, can affect development far into the future.

“The brain determines everything about who we are and how we react to the world,” says Carl Stafstrom, new director of Johns Hopkins’ Division of Pediatric Neurology and the Center for Pediatric Epilepsy. “Helping children with a brain or neurological disorder and their families is my passion.”

It’s also a passion for Jessica Nance, who specializes in treating children with neuromuscular disorders, particularly inherited conditions such as muscular dystrophies, congenital myopathies, neuromuscular junction disorders and inherited neuropathies. “A lot of our job,” she says, “is finding ways to help our patients get the most out of everything they do.”

Stafstrom, who came to Johns Hopkins after serving for 15 years as chief of pediatric neurology at the University of Wisconsin, has long focused on children with epilepsy. He’s particularly interested in dietary means to control seizures, especially the ketogenic diet, which has been used for decades at Johns Hopkins. Considered the premiere center in the world for clinical and research expertise regarding the ketogenic diet, Hopkins has enrolled hundreds of children on the ketogenic diet and the modified Atkins diet.

Besides using the diet to treat his young patients in the clinic, Stafstrom is studying it with colleagues Eric Kossoff and Adam Hartman to better understand how it works and improve on its success. Stafstrom also studies epilepsy itself—how it arises, its comorbidities and how it makes children feel. One of his long-term projects is using children’s art to evaluate how their condition affects them. Often, he explains, anxiety, depression, learning disabilities, cognitive problems and self-esteem issues are apparent in children’s drawings.

Nance, who came to Johns Hopkins as a fellow and then joined the faculty, is focused not only on improving life for her current patients, but for those in the future. To that end, she and Johns Hopkins colleague Tom Crawford, who has long worked with children with neuromuscular disorders, are studying ways to strengthen clinical trial design to better determine whether interventions are effective. The duo is examining different ways to measure functional outcome, including novel tests to assess progression of joint contractures, strength and ankle flexibility.

 

TO REFER A PATIENT: 410-955-4259

Download Issue (PDF)