Abstract

Objective: To describe families’ experiences in managing epileptic patients undergoing ketogenic dietary therapies (KDTs) in acute medical settings. Methods: We conducted a short online survey addressed to the families of patients undergoing a classic ketogenic diet (cKD) for at least three months. The survey was composed of 18 questions exploring the following issues: demographic characteristics, epilepsy diagnosis, ketogenic-diet treatment history, the reason for emergency-ward admission and patient management, surgery-procedure management, and outcomes. Results: A sample of 50 families agreed to participate. Out of 50 patients, 33 (66%) had been undergoing a cKD for more than two years. Fifteen (30%) patients had been admitted at least once to the Emergency Room (ER), and 8.2% had undergone surgical procedures during cKD treatment. The causes of ER admission were the following: seizures, infection, trauma, and gastrointestinal or respiratory problems. In 75% of cases, blood ketonemia was not monitored during ER admission, and according to 46% of responders, the medical staff intervening did not have a basic knowledge of KDTs. Conclusions: According to both our experience and caregivers’ reports, it might be useful to search for standardized specific approaches to patients undergoing KDTs in the emergency setting.

Highlights

  • Ketogenic dietary therapies (KDTs) represent an established and effective treatment option for childhood drug-resistant epilepsy (DRE) [1], which is defined as insufficient seizure control after adequate trials of two tolerated, appropriately selected antiepileptic drugs [2] and affects about 10% to30% of epileptic patients [3]

  • In this specific subset of patients, compliance appears to be high when the ketogenic diet (KD) is administered through a gastro-intestinal tube [10]; in a recent review [1], drop out was reported at rates ranging from 10% at three months to 46% at 16 months, due to a lack of compliance and intolerability caused by adverse events

  • According to the answers provided, in most cases (90%), the medical staff who intervened took into consideration that the patient was undergoing a classic ketogenic diet (cKD), and contact with the referring epileptologist/keto-team became possible on the same day of hospital admission

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Summary

Introduction

Ketogenic dietary therapies (KDTs) represent an established and effective treatment option for childhood drug-resistant epilepsy (DRE) [1], which is defined as insufficient seizure control after adequate trials of two tolerated, appropriately selected antiepileptic drugs [2] and affects about 10% to30% of epileptic patients [3]. Ketogenic dietary therapies (KDTs) represent an established and effective treatment option for childhood drug-resistant epilepsy (DRE) [1], which is defined as insufficient seizure control after adequate trials of two tolerated, appropriately selected antiepileptic drugs [2] and affects about 10% to. The conditions turn out to be more complicated for DRE patients. In this specific subset of patients, compliance appears to be high when the KD is administered through a gastro-intestinal tube [10]; in a recent review [1], drop out was reported at rates ranging from 10% at three months to 46% at 16 months, due to a lack of compliance and intolerability caused by adverse events

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