Purpose: The goal of this work was to report the words parents use to describe a seizure in which they thought their child was dying, so as to increase the awareness of professionals with respect to the impact seizures may have on family life.
Methods: An audit was carried out on 234 cases from a specialist epilepsy center and 35 cases from a tertiary referral outpatient clinic.
Results: Of the 54 parents who thought their child was dying in a seizure, in 45 cases the parents' exact words were recorded in the first person, and in 9 cases, their words were reported in the third person. Many parents took actions that illustrated their high degree of concern: 32 children were taken to hospital, 18 by ambulance, and 3 parents gave mouth-to-mouth resuscitation.
Conclusions: Seizures often cause major concern in parents and many think that their child is dying. Prolonged seizures and limpness and/or cyanosis appear to be associated with this fear. Professionals can gain valuable insight into the impact of seizures on parents by asking them about their reactions to seeing their child having a seizure.