Ketogenic diet therapy for children with super-refractory status epilepticus in intensive care: International clinical practice recommendations

Objective: We aimed to create practical recommendations to support healthcare teams starting ketogenic diet therapy (KDT) for children with super-refractory status epilepticus in intensive care settings. Methods: A literature review was conducted to extract published data on patient selection, diet prescription, diet initiation, monitoring, fine-tuning, and discontinuation of KDT for super-refractory status epilepticus. Statements were formulated within each subtopic, and an online survey was distributed to gauge the extent of international agreement with these statements to inform consensus-based recommendations for initiation and maintenance of KDT in pediatric intensive care settings, with a focus on enteral nutrition. Consensus on a statement for inclusion in the core recommendations was reached if ≥75% of respondents “Agreed” or “Strongly Agreed”. Recommendations from relevant published guidelines or studies were also included. Results: Twenty-two relevant manuscripts were identified, and 25 statements were formulated. Seventy-two healthcare professionals responded to the survey, including dietitians, medics, nurses, intensivists, and a neurophysiologist. Clinical recommendations were made across the following areas, using evidence from published literature, survey agreement, or the clinical expertise of the authors: patient selection and timing of start, preparation for treatment, dietary prescription, diet initiation, monitoring adverse effects, fine tuning, and weaning of KDT. Thirty statements met the criteria for core recommendations. Significance: These are the first international multidisciplinary recommendations for use of KDT for children with super-refractory status epilepticus, intended as a sensical guide for dietitians, neurologists, intensivists, and associated healthcare professionals. The majority of the recommendations are based on survey agreement due to a paucity of published evidence. Plain Language Summary: Children with very severe seizures that do not stop despite medication often need care in intensive care units. This study brings together published evidence and international expert consensus to provide clear guidance on when and how a high-fat, low-carbohydrate ketogenic diet can be started safely in this setting. The recommendations highlight early diet initiation, close monitoring, and strong teamwork between doctors, dietitians, nurses, and pharmacists while recognizing that more high-quality research is still needed.