Transitioning pediatric patients receiving ketogenic diets for epilepsy into adulthood

Abstract

Purpose: To examine the process for transitioning adolescents on dietary management for intractable epilepsy to adult neurologic care.

Methods: Ten patients, ages 6-16 years when the ketogenic or modified Atkins diet was initiated, were identified; age at transition was 18-43 years. All patients were seen at Johns Hopkins Hospital, Baltimore, Maryland.

Results: Seven remain on diets (4 Ketogenic, 3 modified Atkins diet) at this time with mean diet duration of 15.5 years (range 4-32 years). Most patients had excellent but not complete seizure control and several had recurrence or worsening of seizures with attempts to wean dietary therapy, hence the need to continue. Three main transition options were utilized: (1) continue being followed in pediatric clinic (n=2), (2) establish care with an adult neurologist (n=2), or 3) receive care from the Adult Epilepsy Diet Center (n=6). Those patients followed in the Adult Epilepsy Diet Center were slightly more likely to remain on dietary therapy following transition (5/6 vs. 1/4, p=0.12).

Conclusion: It is important for adolescents with epilepsy receiving ketogenic diets to have transition plans in place for when they become adults. Adult epilepsy diet centers are the ideal option when possible.