Abstracts

Rationale: In the recent 2018 updated recommendations from the International Ketogenic Diet Study Group, 80% of surveyed centers initiate the classic ketogenic diet on an inpatient basis. The European consensus ketogenic metabolic therapy infant guidelines recommend all infants < 12 months of age be hospitalized for initiation of the ketogenic metabolic therapy (KMT), for close monitoring and treatment of known adverse effects. Since the start of the ketogenic program at Phoenix Children’s Hospital, we have routinely initiated KMT in the outpatient setting through extensive education, regular clinic visits, and close phone (and now electronic) correspondence with the dietitians and epileptologists. The COVID-19 pandemic further highlighted the importance of this method for initiation of KMT. This study is to review our experience and report on the safety and efficacy of initiating KMT in an outpatient setting in infants ≤ 18 months of age.

Methods: We performed a retrospective descriptive chart review of 33 infants 18 months and younger initiated on the KMT from 2011 to 2022 at Phoenix Children’s Hospital.

Results: Median age of patients was 10 months (4-18 months, mean = 10 months). Etiologies for epilepsy included pathogenic genetic mutations in 42% (n=14), unknown in 33% (n=11), and structural abnormalities (congenital and acquired) in 24% (n=8) of patients. We found KMT reduced seizure burden by at least 50% in 58% (n=19) of patients. One patient had less than 30% reduction in seizures, 10% (n=3) of patients had transient improvement but then went back to baseline, 27% (n=9) of patients did not have any benefit. Adverse effects were reported in 79% (n=26) of patients. Most common side effects included constipation in 58% (n=19), acidosis in 30% (n=10), and vomiting in 21% (n=7). Of those patients who developed side effects, 100% (n=26) had adverse effects that were managed in the outpatient setting, while 14% (n=4) required hospital admission for managements of side effects after initiation of KMT. Of the 4 patients who were admitted to the hospital, one was weaned off the diet due to poor growth while three continued the diet. No patients developed chronic complications due to KMT.

Conclusions: These data demonstrate safety and efficacy of initiating KMT in an outpatient setting even for infants ≤ 18 months of age.  This could potentially change how other hospital ketogenic programs implement KMT, in turn leading to decreased psychosocial and economic costs associated with hospitalization, as well as increasing access for patients.

Funding: None