Evolving Treatment Goals Across the Dravet Syndrome Journey

This segment explores how treatment goals and expectations evolve over time for individuals living with Dravet syndrome and their families. As children age, seizure frequency may decrease, shifting the clinical focus toward cognitive, behavioral, and developmental challenges. Caregivers describe the difficult balance between maintaining seizure control and preserving quality of life, particularly when children are stable on multiple medications. The discussion highlights how treatment conversations change during adolescence, with increased attention to non-seizure symptoms, functional independence, and long-term planning. Dr. Joseph Sullivan emphasizes the growing importance of transitions of care as patients move from pediatric to adult providers, noting the challenges families face when leaving long-standing clinical relationships. The segment also reflects on how families adapt over time, moving from crisis-driven decision-making to a more holistic, long-term perspective. Together, clinicians and caregivers describe how experience, trust, and shared understanding help guide thoughtful treatment adjustments throughout different stages of the Dravet syndrome journey.