Patient handout

Pediatric status epilepticus

PRODUCTION

1. Your condition

This handout is for pediatric status epilepticus. Your care team identified this based on: ongoing seizure ≥5 min in a child (ilae 2015 se definition; ncs/aes 2016 glauser).

Other reasons your team may use this plan: ≥2 seizures without recovery to baseline in a child (ilae 2015 se definition); post-ictal child not returning to baseline — concern for non-convulsive se (ncs/aes 2016 glauser).

2. Your medications

Take these medications exactly as prescribed. Do not stop or change a dose without talking to your provider.

Medication	Starting dose	How	When	What it does
lorazepam	0.1 mg/kg IV (max 4 mg per dose)	IV	q5 min × 2 max	NCS/AES 2016 Glauser — first-line IV benzo; RAMPART Silbergleit NEJM 2012 comparator arm
midazolam	0.2 mg/kg IM (max 10 mg) OR 0.2 mg/kg IN OR 0.5 mg/kg buccal	IM/IN/buccal	single dose	RAMPART (Silbergleit NEJM 2012 PMID 22335736) — IM midazolam non-inferior to IV lorazepam; ConSEPT/EcLiPSE Lancet 2019 supports IN/buccal in peds
diazepam	0.2-0.5 mg/kg PR (max 20 mg) if no IV/IM/IN access	PR	single	Home rescue + EMS (NCS/AES 2016 Glauser)
fosphenytoin	20 PE/kg IV at max 3 PE/kg/min (max 1500 mg PE)	IV	single load	ESETT (Kapur NEJM 2019 PMID 31774955) — equivalent to LEV and VPA in peds; NCS/AES 2016 Glauser
levetiracetam	60 mg/kg IV (max 4500 mg) over 15 min	IV	single load	ESETT (Kapur NEJM 2019) — equivalent; preferred when avoiding cardiac monitoring or hepatic metabolism; ConSEPT/EcLiPSE Lancet 2019
valproate	40 mg/kg IV (max 3000 mg) over 10 min	IV	single load	ESETT (Kapur NEJM 2019) — equivalent; AVOID in <2 yr hepatotoxicity, urea cycle disorder, mitochondrial (NCS/AES 2016 Glauser)
midazolam_infusion	0.2 mg/kg IV bolus then 0.1-2 mg/kg/h infusion (titrate to seizure cessation or burst-suppression)	IV	continuous	Preferred Stage 3 anesthetic — less hemodynamic impact than pentobarbital (NCS/AES 2016 Glauser)
pentobarbital	5 mg/kg IV load then 1-3 mg/kg/h	IV	continuous	Burst suppression; hypotension + ileus (NCS/AES 2016 Glauser)
ketamine	1-2 mg/kg IV load then 1-3 mg/kg/h infusion	IV	continuous	NMDA blockade preserved when GABA receptors downregulated; less hypotension than barbiturate (NCS/AES 2016 Glauser expert consensus)
pyridoxine	100 mg IV	IV	single, may repeat	Pyridoxine-dependent epilepsy trial in infants <18 mo with refractory SE (NCS/AES 2016 Glauser)
dextrose_25	0.5-1 g/kg IV	IV	single	Reverse hypoglycemia-induced seizure (NCS/AES 2016 Glauser)
magnesium_sulfate	25-50 mg/kg IV (max 2 g)	IV	single	Reverse Mg-deficient seizure (NCS/AES 2016 Glauser)

Plan: Pediatric SE — Stage 1 abortive → Stage 2 second-line → Stage 3 anesthetic

3. When to call your provider

Contact your care team if any of the following happen:

Breakthrough SE despite home rescue → ED + admit + AED-level audit + adherence deep-dive (AES/NCS 2016 Glauser)
New refractory seizures despite 2 AEDs at therapeutic levels → drug-resistant epilepsy classification + epilepsy-surgery referral (ILAE drug-resistant definition)
New developmental regression / behavior change → autoimmune-encephalitis workup + genetic + metabolic workup (Dalmau 2011 + ILAE)
AED side effect requiring discontinuation (rash, hepatotoxicity, blood dyscrasia, mood) → cross-titrate to alternative; never stop abruptly (ILAE AED-safety)
Suicidal ideation on AED (especially levetiracetam, topiramate) → mental-health urgent referral; routes to psych.depression.core.v1 / psych.suicidality.ed.core.v1 (FDA AED suicidality warning)
Pregnancy on teratogenic AED → urgent neurology + MFM + genetic counseling; do NOT abruptly stop AED (ILAE pregnancy task force)

4. When to seek emergency care

Call 911 or go to the nearest emergency room right away if you have:

Persistent seizure after Stage 1 benzo + Stage 2 AED (typically >=40 min) (NCS/AES 2016 Glauser; ESETT Kapur NEJM 2019)(life-threatening)
Persistent / recurrent seizure >=24 h despite anesthetic infusion (NCS/AES 2016 Glauser)(life-threatening)
Fingerstick BG <60 in infant or <70 in older child during SE (NCS/AES 2016 Glauser)
Fever + SE + altered baseline in child (NCS/AES 2016 Glauser)
Refractory SE in infant <18 mo (NCS/AES 2016 Glauser)
CK >5000 + AKI after prolonged SE (NCS/AES 2016 Glauser)
Failure of benzodiazepine + 1 second-line agent at 30+ min from seizure onset — refractory SE per AES/NCS 2016 + ILAE 2015 definitions (NCS/AES 2016 Glauser PMID 26900382; ILAE 2015 Trinka PMID 26336905)(life-threatening)
≥ 24 h on anesthetic infusion without seizure cessation OR recurrent SE on attempt to wean anesthetic — super-refractory SE per ILAE 2015 (NCS/AES 2016 Glauser; ILAE 2015 Trinka)(life-threatening)
RR / oxygen level (SpO₂) deterioration, aspiration during convulsive activity, or inability to protect airway during SE — life-threatening hypoxic injury risk (NCS/AES 2016 Glauser)(life-threatening)
Convulsive seizure cessation clinically but cEEG shows ongoing non-convulsive SE (electrographic SE despite no overt motor activity) — common after Stage 2-3 treatment; missed without cEEG (NCS/AES 2016 Glauser)
Subacute prodrome (behaviour change, agitation, psychosis, dyskinesia, autonomic dysfunction) + new SE + CSF lymphocytic pleocytosis + MRI temporal/frontal T2/FLAIR changes — high probability of anti-NMDAR or other autoimmune encephalitis (Dalmau Lancet Neurol 2011 PMID 21163445)
Neonate / infant (< 18 mo) with refractory SE + EEG burst-suppression + no clear etiology after initial workup — possible pyridoxine-dependent epilepsy OR folinic-acid-responsive seizure; rare but reversible (NCS/AES 2016 Glauser)
New-onset SE in previously well child with prodromal febrile illness 24 h - 2 wk before onset (FIRES); OR new-onset SE in previously well adult/adolescent without clear acute/active structural/toxic/metabolic cause (NORSE) — high mortality + severe morbidity pattern (Hirsch consensus 2018; AES/NCS 2016 Glauser)(life-threatening)

5. Follow-up

Pediatric neurology, AED titration, family training (rescue benzo at home — diazepam rectal, midazolam buccal/IN) (NCS/AES 2016 Glauser; RAMPART Silbergleit NEJM 2012); MRI as needed

6. Sources

Guideline: NCS/AES 2016 (Glauser) + ESETT NEJM 2019 + RAMPART NEJM 2012 + ILAE 2015 + EcLiPSE/ConSEPT Lancet 2019 + Dalmau anti-NMDAR Lancet Neurol 2011