EPI Talks: The Teenage Patient with a Developmental Epileptic Encephalopathy at the Intersection of Pediatric and Adult Epilepsy Care-EPITalks

Video Transcription

Video Summary

The webinar examines the care of teenagers and young adults with developmental and epileptic encephalopathies (DEEs) as they transition from pediatric to adult epilepsy services. Speakers explain that DEEs involve both an underlying cause that affects development and seizure or EEG activity that may further impair it. Distinguishing these contributions helps set treatment goals, counsel families, and guide research and precision therapies.<br /><br />For adults inheriting care, the panel recommends reviewing the patient’s history with caregivers and reassessing the cause of epilepsy. Consider reanalyzing prior genetic results, updating older single-gene or limited-panel testing with exome or genome sequencing, and repeating brain MRI when earlier imaging is outdated. A new EEG can also help characterize current disease.<br /><br />Treatment should be individualized to the syndrome and etiology. The speakers review medication options and cautions for Lennox–Gastaut and Dravet syndromes, including drug interactions and monitoring requirements for cannabidiol, fenfluramine, and stiripentol. Clinicians should also assess medication benefit and side effects, SUDEP risk, and whether dietary therapy, neuromodulation, or palliative surgery may help.<br /><br />Transition care extends beyond seizure control. Teams should address guardianship, insurance, disability support, comorbidities, caregiver capacity, and long-term living plans. The panel also highlights emerging disease-modifying approaches, including gene-targeted therapies, and urges clinicians not to assume that genetic evaluation or discussion of SUDEP has already occurred.

Keywords

developmental and epileptic encephalopathies

transition care

adult epilepsy services

genetic testing

Lennox-Gastaut syndrome

Dravet syndrome

EEG reassessment

SUDEP risk

precision therapies

neuromodulation