Inquest into the Death of Child L (Name Subject to Suppression Order)

13y · Male·Epileptic seizure with aspiration

Child L, a 13-year-old boy with autism, cognitive impairment and poorly controlled generalised epilepsy, died from sudden unexpected death in epilepsy (SUDEP) with aspiration. His seizures remained refractory despite appropriate anti-epileptic medications (levetiracetam, lamotrigine, topiramate). Key clinical issues included: medication non-compliance with topiramate (not detected in toxicology despite prescription); multiple missed specialist appointments; inadequate medication review prior to death; concerning medication prescribing (diazepam tablets inappropriate for acute seizure management); and inadequate medication supervision. Toxicological findings revealed topiramate not taken, low levetiracetam levels, and unexplained methadone presence. Clinical lessons: ensure robust systems to verify medication compliance in complex seizure cases; coordinate care between neurology and community paediatricians; implement structured seizure management plans with clear escalation triggers; address polypharmacy and appropriateness of medications prescribed.