Circumstances surrounding sudden unexpected death in epilepsy in children: A national case series
Robyn Whitney1, Anne Keller1, Shelly-Anne Li1
1Division of Neurology, Department of Paediatrics, Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada.
Insights
Sudden unexpected death in epilepsy (SUDEP) can occur in children of all ages, even infants. A recent infection was frequently observed before death, potentially increasing seizure risk and warranting closer monitoring.
Area of Science:
- Pediatric Neurology
- Epilepsy Research
- Forensic Pathology
Background:
- Sudden unexpected death in epilepsy (SUDEP) is a critical concern in pediatric epilepsy management.
- Understanding the specific circumstances and risk factors for pediatric SUDEP is essential for prevention strategies.
- Existing data on pediatric SUDEP is limited, necessitating larger case series for comprehensive analysis.
Purpose of the Study:
- To investigate the clinical factors and circumstances associated with pediatric sudden unexpected death in epilepsy (SUDEP).
- To identify potential risk factors that may contribute to SUDEP in children.
- To contribute to the largest pediatric SUDEP case series to date for enhanced understanding.
Main Methods:
- A retrospective case series analysis was performed on pediatric SUDEP cases across Canada.
- Data was collected from multiple sources including the Ontario Forensic Pathology Service and Canadian Pediatric Surveillance Program.
- Demographic, epilepsy history, comorbidities, and death circumstances were systematically analyzed.
Main Results:
- Forty-nine pediatric SUDEP cases were analyzed, with a median age at death of 8 years.
- Global developmental delay (GDD) was present in 74% of cases and associated with earlier seizure onset.
- Unwitnessed deaths (89%) and recent infections (46%) were common findings, similar to adult SUDEP cohorts.
Conclusions:
- Pediatric SUDEP occurs across all ages, including infants, and in epilepsies with or without neurodevelopmental impairment.
- Circumstances surrounding death, such as unwitnessed events, mirror findings in adult SUDEP populations.
- The frequent observation of recent infections suggests a potential trigger for terminal seizures, highlighting the need for heightened surveillance during such periods.
Objective:
This study was undertaken to understand the circumstances surrounding pediatric sudden unexpected death in epilepsy (SUDEP) and identify clinical factors that may be associated with SUDEP in childhood.
Methods:
A retrospective case series was conducted. Pediatric SUDEP cases were collected across Canada from the Ontario Forensic Pathology Service, Canadian Pediatric Surveillance Program, and Canadian Pediatric Epilepsy Network. Demographics, epilepsy history, comorbidities, and circumstances surrounding death were analyzed.
Results:
Forty-nine children with pediatric SUDEP were analyzed; 25 (51%) were females, and the median age at death was 8 years. Six children (12%) were <2 years of age at the time of death. Information on seizure types 6 months before death was known in 35 children. Twenty-two had tonic-clonic seizures within the last 6 months prior to death (63%). Seven children (18%) had no tonic-clonic seizures in their lifetime. Two thirds of children were treated with ≥2 antiseizure medications. Genetic etiologies were most common (55%). Data on global developmental delay (GDD) was known in 46 children; 12 children (26%) had no impairment, and 34 were globally delayed (74%). Children with GDD had earlier age at seizure onset (p < .001); however, epilepsy duration was similar to those without GDD (p = .170). Similar to adult cohorts, death was often unwitnessed (n = 41/46, 89%). Information on recent infection before death was known in 37 children. Seventeen children (46%) had a recent infection.
Significance:
Our study represents the largest pediatric SUDEP case series to date. SUDEP occurred in children of all ages, including infants, with a spectrum of epilepsies with and without neurodevelopmental impairment. The circumstances around death (i.e., timing of death, witnessed/unwitnessed) were similar to previous SUDEP cohorts. A recent infection was often observed, which could decrease seizure threshold and trigger a terminal seizure and may suggest that times of increased seizure risk could warrant heightened surveillance for SUDEP. However, further research is needed to determine the significance of this finding.
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