Shared Decision-Making in Dravet Syndrome Treatment

This segment focuses on how treatment decisions for Dravet syndrome are individualized and shaped through collaboration between clinicians and families. Dr. Joseph Sullivan emphasizes that there is no single “right” sequence of medications and that care plans are built through ongoing, mutual decision-making. A caregiver describes how treatment evolved over time, including initial therapies, subsequent medication adjustments, and the difficult balance between seizure control and preserving a child’s development, personality, and day-to-day quality of life. The discussion highlights how families weigh benefits and side effects, including concerns about polytherapy and the challenge of determining whether changes in development are driven by the disease, medication effects, or both. Dr. Sullivan notes that avoiding over-medication is a growing priority and that consensus guidelines can support clinical discussions without becoming a rigid protocol. The segment also acknowledges that clinical trial opportunities may introduce additional choices for families, reinforcing the importance of transparent communication and individualized planning throughout the treatment journey.