Sudden unexpected death in epilepsy (SUDEP) is a rare but devastating complication of epilepsy, affecting approximately 1 child per 4,000 person-years. (62) SUDEP is defined as an unexpected death in a person with epilepsy that is unrelated to an accident or seizure emergency. SUDEP is most commonly seen in adolescents and young adults with poorly controlled epilepsy who have frequent nocturnal convulsive seizures. (63) It is typically unwitnessed and occurs predominantly during sleep.
The etiology of SUDEP is not clear but it is likely the result of postictal suppression of cardiac and respiratory drive. Although discussion of this complication can make many providers uncomfortable, many parents, who have witnessed their child have seizures, are worried about the risk of death. Furthermore, information on this topic is readily accessible online. Although it is easy to avoid discussion in an attempt to spare the family undue distress, this is a concern that keeps many parents awake at night, and often they are grateful that a provider discusses this topic.