"resourceType": "Condition",
"id": "cond-ep-dravet-001",
"clinicalStatus": { "coding": [{ "code": "active" }] },
"verificationStatus": "confirmed",
"code": {
"coding": [{
"system": "http://snomed.info/sct",
"code": "230437007",
"display": "Dravet syndrome"
}]
},
"onsetAge": { "value": 14, "unit": "months" },
"severity": "severe"
"resourceType": "MedicationRequest",
"status": "active",
"intent": "order",
"medicationCodeableConcept": {
"coding": [{
"system": "http://www.nlm.nih.gov/research/umls/rxnorm",
"code": "2183126",
"display": "Fenfluramine 2.2mg/mL"
}]
},
"dosageInstruction": [{
"doseQuantity": { "value": 0.35, "unit": "mg/kg/day" }
}],
"note": "Adjunctive therapy; valproate-based regimen"
"resourceType": "Observation",
"status": "final",
"code": {
"coding": [{
"system": "http://loinc.org",
"code": "11524-6",
"display": "EEG study"
}]
},
"valueString": "Generalized 3-4Hz spike-and-wave; multifocal spikes; photosensitivity present",
"effectiveDateTime": "2026-03-14T09:30:00Z"
"resourceType": "Encounter",
"status": "finished",
"class": "inpatient",
"type": [{
"coding": [{
"display": "Video-EEG Monitoring"
}]
}],
"period": {
"start": "2026-03-12",
"end": "2026-03-15"
},
"reasonCode": "Seizure characterization; drug-resistant epilepsy evaluation"
๐ Encounter Timeline
2019-06-14
First febrile seizure (prolonged, 22 min)
Age 14 months ยท ED visit ยท Status epilepticus protocol initiated
2019-09-02
Genetics referral โ SCN1A panel ordered
Dravet syndrome suspected based on clinical phenotype
2019-10-18
Valproate initiated (15 mg/kg/day)
Sodium channel blockers avoided per SCN1A genotype
2022-01-08
Status epilepticus โ PICU admission (3 days)
Breakthrough seizure cluster ยท Clobazam added
2024-08-20
Fenfluramine (Fintepla) initiated
Adjunctive therapy ยท 50% seizure reduction at 3-month follow-up
2026-03-12
Video-EEG monitoring (72hr) โ current admission
CHIA research protocol ยท Multi-modal data capture