Aim: To determine the efficacy of fenfluramine on seizure frequency in patients with Sunflower syndrome. Secondary endpoints were changes in electroencephalogram (EEG) characteristics, cognitive functioning, executive functioning, and quality of life.
Method: In this open-label study, patients underwent a 4-week baseline period, followed by 3 months of treatment.
Objective: To characterize the clinical phenotype, treatments, and impact on quality of life of Sunflower syndrome.
Methods: A 138-question survey was created focusing on seizure description, disease course, treatment history, medical history, family history, and aspects of quality of life of individuals with Sunflower syndrome. The survey was administered to individuals with Sunflower syndrome who experience hand waving episodes (HWE) and/or their caregivers via Research Electronic Data Capture (REDCap).