Our dynamic Drew is 14 years old, and ever so sweet and handsome! He loves his family, cars, and horseback riding. Oh, and did I mention cars (car magazines, push button cars, riding in cars, riding in fast race cars, etc)! One of his favorite birthdays was when he got to do a 150mph three times around a race track with a professional race car driver. Suited up and all!
Drew was diagnosed with Lennox-Gastaut Syndrome (LGS) in 2011. LGS is a rare and severe form of childhood-onset epilepsy, which is characterized by frequent seizures, multiple seizure types, and resistant to medicine. As Drew’s parents, we suspected “something” was up when his stares became longer and then small head drops came about. The pediatrician immediately scheduled a 48 hour EEG. After 12 hours, they saw plenty, and sent us on our way. The doctors said that he was having seizures of 5 different types all night long. He began the medication game. NOT fun. Medications changed him. Took away a lot of his personality and any advancements. And still not seizure free. Actually, over time they continually became worse. He recently started having drop seizures within the last 2 months causing him to fall and harm himself on multiple occasions. UGH!
Almost a year-to-date (from getting on the wait list) we were able to pick up Drew’s Charlotte’s Web Hemp Oil (CWHO). CWHO is a hybrid cannabis strain, that is a good option in treating seizures. As I am writing this, Drew has been on a low starting dose for 3 weeks. Ready…We have seen a 90% reduction in seizures, had great reports from all of his therapists (PT, OT, and speech), caught him laughing again, and have seen some calmness come about, allowing us to sit down and be a family…Just to name a few things ! We can’t wait to start reducing his Depakote, and see what happens.