• Alejandra Vasquez, Raquel Farias-Moeller, Iván Sánchez-Fernández, Nicholas S Abend, Marta Amengual-Gual, Anne Anderson, Ravindra Arya, James N Brenton, Jessica L Carpenter, Kevin Chapman, Justice Clark, William D Gaillard, Tracy Glauser, Joshua L Goldstein, Howard P Goodkin, Rejean M Guerriero, Yi-Chen Lai, Tiffani L McDonough, Mohamad A Mikati, Lindsey A Morgan, Edward J Novotny, Adam P Ostendorf, Eric T Payne, Katrina Peariso, Juan Piantino, James J Riviello, Tristan T Sands, Kumar Sannagowdara, Robert C Tasker, Dmitry Tchapyjnikov, Alexis Topjian, Mark S Wainwright, Angus Wilfong, Korwyn Williams, Tobias Loddenkemper, and Pediatric Status Epilepticus Research Group (pSERG).
• Division of Epilepsy and Clinical Neurophysiology, Department of Neurology, Boston Children's Hospital, Harvard Medical School, Boston, MA.
• Pediatr Crit Care Me. 2021 Dec 1; 22 (12): e613e625e613-e625.

ObjectivesTo characterize the pediatric super-refractory status epilepticus population by describing treatment variability in super-refractory status epilepticus patients and comparing relevant clinical characteristics, including outcomes, between super-refractory status epilepticus, and nonsuper-refractory status epilepticus patients.DesignRetrospective cohort study with prospectively collected data between June 2011 and January 2019.SettingSeventeen academic hospitals in the United States.PatientsWe included patients 1 month to 21 years old presenting with convulsive refractory status epilepticus. We defined super-refractory status epilepticus as continuous or intermittent seizures lasting greater than or equal to 24 hours following initiation of continuous infusion and divided the cohort into super-refractory status epilepticus and nonsuper-refractory status epilepticus groups.InterventionsNone.Measurements And Main ResultsWe identified 281 patients (157 males) with a median age of 4.1 years (1.3-9.5 yr), including 31 super-refractory status epilepticus patients. Compared with nonsuper-refractory status epilepticus group, super-refractory status epilepticus patients had delayed initiation of first nonbenzodiazepine-antiseizure medication (149 min [55-491.5 min] vs 62 min [33.3-120.8 min]; p = 0.030) and of continuous infusion (495 min [177.5-1,255 min] vs 150 min [90-318.5 min]; p = 0.003); prolonged seizure duration (120 hr [58-368 hr] vs 3 hr [1.4-5.9 hr]; p < 0.001) and length of ICU stay (17 d [9.5-40 d] vs [1.8-8.8 d]; p < 0.001); more medical complications (18/31 [58.1%] vs 55/250 [22.2%] patients; p < 0.001); lower return to baseline function (7/31 [22.6%] vs 182/250 [73.4%] patients; p < 0.001); and higher mortality (4/31 [12.9%] vs 5/250 [2%]; p = 0.010). Within the super-refractory status epilepticus group, status epilepticus resolution was attained with a single continuous infusion in 15 of 31 patients (48.4%), two in 10 of 31 (32.3%), and three or more in six of 31 (19.4%). Most super-refractory status epilepticus patients (30/31, 96.8%) received midazolam as first choice. About 17 of 31 patients (54.8%) received additional treatments.ConclusionsSuper-refractory status epilepticus patients had delayed initiation of nonbenzodiazepine antiseizure medication treatment, higher number of medical complications and mortality, and lower return to neurologic baseline than nonsuper-refractory status epilepticus patients, although these associations were not adjusted for potential confounders. Treatment approaches following the first continuous infusion were heterogeneous, reflecting limited information to guide clinical decision-making in super-refractory status epilepticus.Copyright © 2021 by the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies.

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