The arrival of Epidiolex is unlikely to erase the unregulated CBD market, however. For one, Epidiolex has been studied only in connection with a small number of epileptic conditions. If and when Epidiolex makes its way to drug stores, it will be approved only for the treatment of Dravet Syndrome and Lennox-Gastaut Syndrome, two rare forms of catastrophic epilepsy. People like me, with comparatively mild Janz Syndrome, and people like Harper, with extremely rare conditions like CDKL5, may still be out of luck.
Neurologists are skilled at predicting side effects and interactions between well-researched pharmaceuticals. But due to the dearth of reliable research about CBD, doctors like Hernandez and Knupp cannot guide their patients in its use. If there are adverse reactions, Penny will find out because Harper will suffer through them. She has had to figure out through trial and error how best to mix and measure Harper’s oils. The bottom line, Penny said, is simple: “We are the research.”
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