Abstracts

Rationale: Children with epilepsy have an increased risk of death compared to the general population. Sudden Unexpected Death in Epilepsy (SUDEP) is a devastating cause of mortality in individuals with epilepsy. The incidence of SUDEP in children is up to 0.43 per 1000 patient years of epilepsy, more than 10 times the rate of sudden death in children in general. Risk factors for SUDEP have been studied in adults; however, pediatric specific factors have not been well defined. Careful evaluation of pediatric SUDEP cases is important to help better identify potential factors in children with epilepsy at risk of sudden death. Methods: The goal of this study was to determine potential risk factors for pediatric SUDEP through the development of a national, multi-centered, prospective population-based registry for SUDEP. Children with epilepsy with an unexpected death from January 1, 2014 to December 31, 2015 were sought for enrollment. Inclusion criteria were age at death = 18 years, history of epilepsy (?- 2 seizures), death that was sudden and unexpected, death that occurred during normal circumstances and when available an autopsy that determined no anatomical or toxicological cause of death. Deaths due to trauma or drowning were excluded. Cases were collected from the Canadian Pediatric Epilepsy Network (CPEN), Canadian Pediatric Surveillance Program (CPSP), and the Ontario Forensic Pathology Service (OFPS). Records were reviewed for demographics, clinical features, circumstances surrounding death and autopsy findings. Results: Twenty-one cases of pediatric SUDEP were identified: 9 OFPS, 8 CPSP, 3 CPEN & 1 CPSP/CPEN. Nine cases were adjudicated as definite SUDEP, one as definite SUDEP plus, eight as probable SUDEP and three as possible SUDEP. Forty-eight percent were males. The median age at death was 8.3 years (range: 21 months ?" 16 years) and median duration of epilepsy was 5.2 years (range: 2 months ?" 15 years). Sixty-seven percent of SUDEP deaths were in children under the age of ten. The age of seizure onset was known in sixteen (median 14 months) and 94% had onset before 5 years. Eighteen children (85%) were on an AED at the time of death and thirteen (62%) were on two or more. Global delay was present in fifteen. In eighteen children, the state before death was known. Sixteen children (89%) were asleep and two (11%) were awake; death was unwitnessed in fourteen (78%) and witnessed in four (22%). Seventeen children had information regarding the presence of a recent infection; eight (47%) had a recent infection, while nine did not (53%). Conclusions: The majority of SUDEP cases occurred in children with global developmental delay, early onset epilepsy and with seizures that required polytherapy. Almost all deaths were during sleep and were unwitnessed. Almost half of the children had a recent infection, which may potentially favour increased surveillance around the time of illness. Funding: No funding.