Julia is a bright, happy, loving seventh grader. She loves to read and competed in UIL Academic events this year. As a baby, Julia had high fevers after shots, but didn’t have her first seizure until she was in Kindergarten. She was non-responsive just before bed, and she ended up on a ventilator after a LifeFlight trip. We have consulted with many specialists and five pediatric epileptologists, as well as the NIH.
She has had tonic clonic seizures, but her most frequent seizure is absence seizures, where she loses up to 30 seconds of learning and life each time. She was having hundreds per day. We have had dozens of hospitalizations and four surgeries. We tried about 18 different medicines without relief, then a VNS implant, then brain surgery. She has never gotten relief. Our search for a cure led us to California, Florida and Johns Hopkins Hospital, where she was able to begin a version of Ketogenic Diet. She has been on a strict diet for over 3 years, but she continues to struggle. We are vigilant about diet, sleep, her VNS settings and her frequent daily medicine doses.
She would love to drive at 16, plan to go off to college and live independently. Cannabidiol might be her chance for such a life.