Abstracts

Rationale: Use of ketogenic diets in adults with epilepsy has become more common over the past several years. We report our 4 year follow-up experience managing an Adult Epilepsy Diet Center. Methods: A prospective, observational study of adults referred to the Johns Hopkins Adult Epilepsy Diet Center. Adults naïve to diet therapy were started on a PO modified Atkins diet (MAD; 10-30 net grams of carbohydrates per day), an enteral 4:1 ratio fat: carbohydrates and protein ketogenic diet (KD) per tube feeds, or a combination of both when appropriate. All patients were seen by a neurologist and dietitian for initial evaluation, education, and follow up. Results: One-hundred thirty adults (median age 28 years at diet start (range 4-63 years), 68% female) were consented and followed between August 2010 and June 2014. Thirty-one additional patients are enrolled in ongoing clinical trials (clinicaltrials.gov NCT01796574 & NCT01834482) and will not be presented here. Twenty patients were on ketogenic diets at enrollment (14 on MAD, 6 on 3:1 to 4:1 ratio ketogenic diet (KD). Of the 110 patients naïve to diet therapy, 84 began MAD, 1 began KD, 1 began enteral KD in addition to MAD by mouth as tolerated, 4 have yet to follow up, and 20 chose not to begin. The median anticonvulsants tried was 6 (range: 0-16) and median seizure frequency was 2.5 per week (range: 0-105) in 84 patients that began MAD. Fifty-six patients on MAD supplied a 1-month report of bi-weekly urine ketones, and ≥ 40 mg/dL was achieved in 45 (80%). Sixty-four reported 1-month seizure frequency and of these, 43 (67%) had a >50% seizure reduction, of which 31(48%) were seizure free. Patients who became seizure free had focal epilepsy (18), generalized epilepsy (11, including 5 with juvenile myoclonic epilepsy), Doose syndrome (1), and generalized tonic-clonic seizures (unknown type; 1). Thirty-eight patients supplied 3 month calendars and of these, 26 (68%) had a > 50% seizure reduction and 11 (29%) were seizure free. To date, the average diet duration is 13 months (range: 2 days - 4 years). Thirty-eight (45%) of patients that started MAD have stopped. Reported side-effects included weight loss, hyperlipidemia, constipation, alopecia, amenorrhea, and osteopenia. Conclusions: In 4 years, we have seen over 160 adults to start or maintain ketogenic diets for epilepsy. Since presenting our initial 1 year experience in 2011, use of ketogenic diets in adults has risen significantly worldwide and several adult centers now exist in the United States. We illustrate that maintaining an Adult Epilepsy Diet Center is feasible and effective.