Understanding Death in Children with Epilepsy

Publication date: Available online 31 January 2017
Source:Pediatric Neurology
Author(s): Elizabeth J. Donner, Peter Camfield, Linda Brooks, Jeffrey Buchhalter, Carol Camfield, Tobias Loddenkemper, Elaine Wirrell
Death in children with epilepsy is profoundly disturbing, with lasting effects on the family, community and health care providers. The overall risk of death for children with epilepsy is about 10 times the general population. However, the risk of premature death for children without associated neurological comorbidities is similar to the general population and most deaths are related to the cause of the epilepsy or associated neurologic disability, not seizures. The most common cause of seizure-related death in children with epilepsy is Sudden Unexpected Death in Epilepsy (SUDEP). SUDEP is relatively uncommon in childhood but the risk increases if epilepsy persists into adulthood. While the direct cause of SUDEP remains unknown, most often death follows a generalized convulsive seizure and the risk of SUDEP is strongly related to drug-resistant epilepsy and frequent generalized tonic-clonic seizures. The most effective SUDEP prevention strategy is to reduce the frequency of seizures, although a number of seizure detection devices are in development and in the future may prove to be useful for seizure detection for those at particularly high risk. There are distinct benefits for health care professionals to discuss mortality with the family soon after the diagnosis of epilepsy. An individual approach is appropriate. When a child with epilepsy dies, particularly if the death was unexpected, family grief may be profound. Physicians and other health care professionals have a critical role in the support of families that lose a child to epilepsy. This review will provide health care providers with information needed to discuss the risk of death in children with epilepsy and support families following a loss.



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