Abstracts

Rationale: Dietary therapies (ketogenic diet (KD), modified Atkins diet (MAD), and low glycemic index treatment (LGIT)) are being used increasingly for refractory epilepsy. The complexity of these therapies may require fine-tuning to achieve ideal efficacy. Families may then seek a second opinion from large, experienced, KD centers to help guide this fine-tuning. Methods: Since 2009, Johns Hopkins Hospital has offered a 1-time only, KD second opinion clinic for children on dietary therapies at other centers. Medical records are reviewed in advance followed by neurologist and usually dietitian in-person consultation. We retrospectively reviewed medical records and emails for all children seen in this clinic and subsequently sent a 2-page survey about the experience to parents. Results: From 7/09-4/17, 65 consecutive children (mean age 6 years) were evaluated after a median 9 months diet duration. Forty-four (68%) children were receiving the KD, 20 (31%) MAD, and 1 (2%) LGIT. At the time of the visit, 42 (65%) had achieved >50% seizure reduction, including 23 (35%) with >90% reduction. The primary questions asked by parents focused on improved seizure control (65%), ideal diet duration (18%), confirmation of diet management (11%), antiseizure drug (ASD) reduction (3%), side effect improvement (2%), and EEG normalization (2%). Of the 23 children who had <50% seizure reduction, 18 (78%) parents asked primarily about improving seizure control. Contrarily, all 5 families of children who were seizure-free inquired about ideal diet duration. The most common recommendations from our center were ASD reduction (43%, 23/53 receiving ASDs), oral citrates/calcium/vitamins (38%), and carnitine (31%). Diet discontinuation (after other changes were attempted) was suggested in 25 (38%); more commonly in those with <50% seizure reduction (60% vs. 20%, p=0.001). Post-visit surveys were received from 30 families, of which 27 (90%) reported the visit as helpful and 19 (63%) as offering different recommendations from their current KD center. Parents reported the visit as allowing their child to remain on dietary therapy in 24 (80%) children, with a mean of 21.5 additional months. Conclusions: A ketogenic diet second opinion clinic appears to be a valuable service that larger academic KD centers should offer. This may be particularly helpful in the future for regions with large distances between large and small KD centers, including developing regions. Common parent questions included fine-tuning the diet for better seizure control, changing ASDs, using supplements, and ideal diet duration.