Definition is sudden unexpected death with or without seizures, after exclusion of status epilepticus, where PM does not identify another cause.  Cases almost exclusively in symptomatic epilepsy.

SPEN response to determination of Sheriff Duff (that SUDEP should be discussed with all patients with epilepsy) –

  • Most data on SUDEP from adults.
  • Risk is unlikely to be predictable at time fo diagnosis so debatable that this is the appropriate time to discuss it.
  • No evidence that increased supervision of sleep is of benefit.  So arguable that discussion will cause unnecessary anxiety.

Berg AT, Shinnar S, Testa FM, Levy SR, Smith SN, Beckerman B. Mortality in childhood-onset epilepsy. Arch Pediatr Adolesc Med. 2004 Dec;158(12):1147-52.

Camfield CS, Camfield PR, Veuglers PJ: Death in children with epilepsy: a population-based study. Lancet 2002;359:1891-1895

Weber P, Bubl R, Blauenstein U, Tillmann BU, Lütschg J. Sudden unexplained death in children with epilepsy: a cohort study with an eighteen-year follow-up.  Acta Paediatr. 2005 May;94(5):564-7.