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
Summary
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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