Non-Seizure Challenges in Dravet Syndrome

This segment focuses on the non-seizure features of Dravet syndrome and how these challenges shape daily life over time. Caregivers describe how behavioral rigidity, perseveration, and difficulty with transitions can create significant day-to-day stress, even when seizures become less frequent. One caregiver illustrates how routine activities, such as getting on a school bus, require careful planning because unmet expectations can trigger prolonged emotional escalation that is difficult to redirect through logic alone. The discussion emphasizes the importance of approaching these moments through human and emotional connection rather than simple commands. From a younger child’s perspective, developmental delay is described as a persistent and painful reality that becomes more visible over time, particularly in social settings where peers advance rapidly. Caregivers reflect on the emotional work of redefining achievement and success, while also noting that many children with Dravet syndrome demonstrate remarkable joy and resilience. The segment highlights both the burden of non-seizure manifestations and the unexpected perspective families gain through their children’s happiness and presence.