NYU’s Dravet Center Director Shares Insights from Conference

Dr. Judith Bluvstein, Director of the Dravet Center at NYU Comprehensive Epilepsy Center, recently returned from Dravet.org’s 2012 biennial conference Advancing Research and Enhancing Comprehensive Care: Progress for Patients with Dravet Spectrum Disorders, held last month in Minneapolis. The forum provided Dr. Bluvstein an opportunity to interact face to face again with Dr. Charlotte Dravet, and other recognized colleagues about clinical advancements for treating Dravet syndrome (severe myoclonic epilepsy in infancy), and related epilepsies.

(Dravet syndrome is a severe type of epilepsy syndrome resulting from a mutation in sodium channels in the brain. Seizures generally begin prior to one year of age and are prolonged.)

Among other issues, attendees at the conference discussed the significant rise in rates of Sudden Unexpected Death in Epilepsy (SUDEP) in the Dravet Syndrome population.

“Another development discussed is that meetings are being held with the FDA [Food and Drug Administration] to examine the prospects for seeking its approval of Stiripentol (STP) for treating people with Dravet syndrome,” Dr. Bluvstein says. “Although there are no assurances STP will receive on-label approval, the FDA’s blessing could potentially reduce the cost to patients who can secure insurance coverage.”

Dr. Bluvstein cautions that STP, even if it were to be FDA approved, is not appropriate for treating all types of Dravet-related conditions.

“Given the complexity of the condition, treatments may vary or patients may require a variety of customized treatments,” Dr. Bluvstein adds.  “NYU’s Dravet Center has highly qualified epileptologists, neuropsychologists and a neurogeneticist, clinical nutritionist, and other professionals who collaborate as a coordinated team. We also work closely with pediatric cardiologists because patients may have irregularities in heart rate, and pediatric orthopedics.”

The team’s nutritionist, Registered Dietician Coordinator Courtney Schnabel MS, RD, CDN, has helped many of the Center’s patients with Dravet Syndrome and other conditions receive medical nutrition therapy as part of their epilepsy treatment.

“Considering Dravet is one of the most difficult-to-control epilepsy syndromes, the Ketogenic diet does a great job at controlling seizures in much of the pediatric population with Dravet Syndrome,” Courtney says. But she cautions the diet is not appropriate for treating every type of epilepsy and individual, nor is it an alternative to medical treatment. It is a strict diet with potentially significant risks and should not be administered on one’s own under any circumstances. Rather, the diet should be implemented under close supervision and monitoring by doctors experienced in this therapy. (For information about this diet and its applications, refer to the article Epilepsy Diets: Foods for Thought.

Learn more

Visit the Dravet Center at NYU Comprehensive Epilepsy Center for more information about what it has to offer, other useful resources, or call (646) 558-0808 to make an appointment with one of the physicians below. The Center is organized under direction of Dr. Bluvstein in close collaboration with Dr. Orrin Devinsky, Dr. Daniel Miles, and Dr. James Riviello.