SUDEP, or Sudden Unexpected Death in Epilepsy, occurs when a person with epilepsy dies suddenly and unexpectedly with no other apparent cause of death found. SUDEP is a rare event, although unfortunately children and adults with Dravet Syndrome are at a higher risk of SUDEP than those with other types of epilepsy (1).

SUDEP deaths are often unwitnessed. There may be obvious signs a seizure has happened, though this isn’t always the case. Sometimes SUDEP can occur after a seizure during the recovery phase. There is some evidence to suggest risk may be higher at night-time (2). The cause of SUDEP is not yet known. Researchers are investigating a range of possibilities including heart rhythm and breathing abnormalities after seizure activity.

Because the causes of SUDEP are not sufficiently understood, preventative methods are limited. More research is needed. Achieving the highest level of seizure control is considered to be important for lowering the risk of SUDEP. Monitoring devices, particularly the use of continuous monitoring at night, are often recommended to help alert caregivers to seizure activity or change in heart rate or oxygen saturation levels.

It can be a very difficult topic to discuss, but talking about SUDEP can empower families through awareness. Discussing the risk of SUDEP with your consultant can be very valuable for parents and caregivers. 

SUDEP Action, based in the UK, is an excellent resource for anyone looking for further information or support. https://sudep.org/

The Epilepsy Deaths Register for Ireland (EDRI) was established in 2014 by Epilepsy Ireland in partnership with SUDEP Action. The register provides a safe place for people to report details of an epilepsy-related death. This provides important information for future research into epilepsy deaths. It also provides support for those helping research by providing information on an epilepsy-related death.

https://epilepsydeathsregister.org/ie