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Children with epilepsy have an increased mortality rate but the increase is largely confined to those with symptomatic epilepsy and sudden unexpected death in epilepsy (SUDEP) seems to be rare in childhood although adults with SUDEP often have epilepsy dating from childhood. A Dutch study (Petra M C Callenbach and colleagues.Pediatrics2001;107:1259–63) has provided more data about children.
A total of 472 children aged 1 month to 16 years with newly diagnosed epilepsy were followed up for 5 years during which nine died (Mortality 3.8/1000 person years (seven times population expected rate)). None of the 328 children with nonsymptomatic epilepsy died. The nine deaths in the group of 144 children with symptomatic epilepsy gave a mortality rate of 129/1000 person years (23 times expected rate). Of these nine children, three had progressive neurological disease (Niemann-Pick disease, cerebral ependymoma, infantile ceroid lipofuscinosis) and six had a static encephalopathy. None was thought to have died during a seizure and none was considered to be a case of SUDEP. Most deaths had a respiratory cause.
Children with nonsymptomatic epilepsy have a low risk of death within 5 years of epilepsy onset. Children with symptomatic epilepsy are at high risk of dying from pneumonia or other respiratory cause. SUDEP did not occur in this series.