Of the estimated 150,000 people diagnosed with epilepsy each year in the United States, only two-thirds are effectively treated with medication. That leaves tens of thousands who will require different treatments to keep their seizures under control.
“We need other options,” says neurologist Sarah Kelley, who directs Johns Hopkins’ pediatric epilepsy monitoring unit. “That’s why we have a comprehensive approach at the Johns Hopkins Epilepsy Center.”
The center, which cares for patients of all ages from neonates through adults, is one of the oldest of its kind. Johns Hopkins began diagnosing and treating epilepsy as early as 1908. The center’s pediatric practice got a boost in the 1970s, led by epileptologist John Freeman, an innovator who revived the use of the ketogenic diet and hemispherectomy, two treatments that can be highly effective for some patients but that had fallen out of favor decades ago.
Nowadays, the center includes a multidisciplinary team of experts who treat pediatric epilepsy, including pediatric epileptologists, neurosurgeons, neuroradiologists, dietitians, neuropsychologists and neuropsychiatrists, all working together to provide tailored care for each patient.
Every Tuesday, the team meets to discuss ongoing cases and patients with the most serious disease. Most of these patients, Kelley explains, start treatment with medication. About 20 epilepsy medications are currently available, and new ones periodically go on the market, she adds.
If patients fail on several different medications, dietary treatments may be an option. The Ketogenic Diet Center runs as part of the Johns Hopkins Epilepsy Center, providing consultations and overseeing treatment for patients interested in this high-fat, low-carbohydrate eating plan. In recent years, the center has overseen many patients on a modified Atkins diet, a less restrictive version. Studies have shown that dietary modification can ease symptoms for up to half of patients with refractory epilepsy, Kelley says.
Surgery can also be a viable option that can either significantly ease or completely eliminate seizures for some patients, says pediatric neurosurgeon Shenandoah “Dody” Robinson. Potential candidates for surgery typically spend up to a week in the epilepsy monitoring unit. There, they’re monitored continuously through video EEG to determine the frequency, severity and location of their seizures. A subset of patients will require additional monitoring through stereo-EEG or subdural electrodes.
Once monitoring shows that a patient is a surgical candidate, Robinson says, she and other neurosurgeons in the center offer a wealth of options based on each patient’s condition. Resections that remove the seizure foci can be performed through open craniotomies or, in some cases, ablative procedures can be performed using minimally invasive techniques. Hemispherectomies and corpus callosotomies are effective for some patients. Neurostimulation, a technology that’s recently grown in popularity for treating adult epilepsy, might also eventually be an option in children, Robinson says.
“It’s hard to describe how disruptive epilepsy can be for children and families,” Robinson says. “We aim to offer the entire range of treatment options here so families don’t have to search for help.”