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. It's also unknown what risk factors may be specific for children.

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. The SUDEP research program seeks answers to two important questions: Who is most at risk of SUDEP? and How can we better inform people with epilepsy about SUDEP?

Despite strong evidence that that people with epilepsy and their families want to be told about SUDEP, we know that neurologists are hesitant to talk with their patients about SUDEP. Some doctors are limited in their knowledge about SUDEP and others worry about the negative emotional impact learning about SUDEP may cause. In fact, studies have shown no long term negative affect when people with epilepsy and their families learn about SUDEP. Unfortunately, evidence also indicates that when families do learn about SUDEP, they may misunderstand, incorrectly equating it with other unexpected deaths like drowning.

To address this knowledge gap, the SUDEP research team is conducting a two-part study. The first component seeks to understand how the barriers experienced by child neurologists in discussing SUDEP with families of children with epilepsy. The second component examines how to teach families about SUDEP in a way that is easily understood. By working to bridge the gap between families’ desire to learn about SUDEP and neurologists’ hesitancy to talk about it, we hope to improve SUDEP awareness among neurologists and people affected by epilepsy.

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