To obtain national epidemiological data on the aetiology, management and outcome of refractory convulsive status epilepticus (RCSE) in children.
Data on children admitted with RCSE between 01.01.2008 and 31.12.2009, to eight paediatric intensive care units (PICUs) were retrospectively collected using a standard proforma designed with and co-ordinated by PICANet.
Data were collected on 245 (male, 179) patients aged between <1 month and 16.5 years (median 2.8 years, IQR 1-7.43 years), of which: One hundred and fifty-one patients (male, 89) aged between <1 month and 16.5 years (median 2.3 years, IQR 1-7.17 years) met the study criteria for a diagnosis of RCSE. Causes included acute symptomatic (15.2%), remote symptomatic (29.0%), epilepsy-related (10.6%), progressive encephalopathy (10.6%) febrile seizures (18.2%); no cause was identified in 16.4%. First line treatments included lorazepam (118 patients, 78.1%), diazepam (72, 47.7%) and midazolam (37, 24.5%). Second-line treatments included phenytoin (125 patients, 82.8%) and phenobarbital (seven patients, 4.6%). Third-line treatments included a thiopentone bolus (99 patients, 65.6%), thiopentone infusion (20, 13.2%) midazolam infusion (56, 37.1%) phenobarbital (18, 11.9%), propofol (6, 4.0%) and clonazepam (2, 1.3%). Deviation from the national advanced paediatric life support (APLS) protocol was noted in approximately one quarter of all patients. Six patients died (4.0%). Seventeen patients (11.3%) developed a new neurological deficit on discharge from PICU, of which eight (5.3%) continued to show this deficit at a 30-day follow-up and 12 patients (7.9%) developed de novo epilepsy.
Thiopentone was the most commonly used anticonvulsant to treat RCSE on admission to PICU. Mortality was low and approximately 1 in 25 showed a new neurological deficit at the 30-day follow-up.