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A Ketogenic Collaboration

A Ketogenic Collaboration

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At the table during their monthly teleconference call, from left to right, Hopkins Children’s Center nurse practitioner Sarah Doerrer, dietician Zahava Turner, and pediatric neurologist Eric Kossoff, consult with their counterparts at All Children’s Hospital.

There’s no trick to treating epileptic seizures—just a lot of experience and a comprehensive approach in evaluating and managing these complex disorders in children. Johns Hopkins Children’s Center in Baltimore and All Children’s Hospital (ACH) in St. Petersburg, Fla., a Johns Hopkins Medicine member hospital, have that and more. Both hospitals have rich histories in successfully treating intractable seizures—those that do not respond well to medicine and surgery—with the ketogenic diet. So, the thought occurred to them as ACH and Hopkins were merging in 2010, why not collaborate and create a virtual center of excellence for ketogenic diet patients?

“We saw this as an opportunity to collaborate and produce a powerful armamentarium in treating seizures,” says pediatric epileptologist Steven Parrish Winesett, who heads ACH’s Pediatric Epilepsy Program. “Hopkins is known throughout the world as the leader in the ketogenic diet, so it’s very comforting to have a partner like that go over the kinds of cases we deal with in which patients have multiple other problems.”

“The more minds, the better in treating these complex disorders in children,” says pediatric neurologist Eric Kossoff, who directs the Hopkins Ketogenic Diet Center.

How do they consult 1,000 miles apart? Kossoff and Winesett periodically attend each other’s clinics but the main vehicle of their collaboration is their monthly teleconference in which they share their more complex cases and clinical insights via digital audio-video connections. This collaboration is more than doctor-to-doctor as dieticians and nurse practitioners who specialize in helping patients manage the ketogenic diet participate, too. Adherence to the high-fat, low-carbohydrate diet, they note, is one of the biggest challenges.

“Working with Hopkins dietician Zahava Turner each month, we’re able to better tweak the diet for patients who are really difficult.” says ACH dietician Stacey Bessone.

Kossoff and Winesett note that joint educational activities like case conferences and Grand Rounds presentations, as well as research collaborations, are in store, too.

“We’re integrating our patient databases, too, so we’ll see a lot of joint research coming down the road,” says Winesett. “We’ve started a beautiful relationship.”

In addition to ketogenic diet and nutritional counseling, the comprehensive Pediatric Epilepsy Program at ACH offers a full spectrum of services, including an inpatient Seizure Monitoring Unit with video EEG, genetic and metabolic testing, vagal nerve stimulation, and epilepsy surgery. For more information, call 727-767-8181. Johns Hopkins Children’s Center is known as the premier center in the world for clinical and research expertise regarding the ketogenic diet. For more information, call 410-955-4259.

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