Epilepsy-Related Deaths in Children

Sudden Unexpected Death in Epilepsy (SUDEP) is defined as the death of an otherwise healthy person with epilepsy that occurs either after a seizure or sometimes when there is no recent seizure activity. It is thought to cause 1 death per 1000 per year, with slightly lower rates in children.

Risk factors for SUDEP include having epilepsy for a long period of time, having drug-resistant generalized tonic-clonic seizures, and having seizures at night. Although some risk factors are known, other factors related to SUDEP are unknown – which is the focus of Dr. Elizabeth Donner’s research.

Dr. Donner, the Head of the Epilepsy Program at the Hospital for Sick Children, is currently working with Dr. Michael Pollanen, the Chief Forensic Pathologist in Ontario, to examine epilepsy-related deaths in children across the province. In addition to this work, Dr. Donner has also started a registry for SUDEP deaths in Canadian children.

These SUDEP initiatives are needed to help researchers understand the degree to which this affects Canadian children, which children are at greatest risk and eventually how to prevent SUDEP in children.

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