Despite increasing evidence that CBD (cannabidiol), a nonpsychoactive cannabinoid, can help treat severe seizure disorders, a thirteen-year-old Virginia boy suffering from a rare disease has been denied treatment for his use of the plant.
Kaden Hartman suffers from Niemann-Pick disease, also dubbed “Child Alzheimer’s.” According to the National Niemann-Pick Foundation, it is a rare disorder that affects lysosomal storage and metabolism and can cause symptoms including progressive loss of early motor skills, slurred speech, seizures, and hypersensitivity to touch. Most children diagnosed with Niemann-Pick do not live past age 20.
Kaden’s mother, Kathy, contacted High Times magazine to tell his story after he was denied access to an experimental medication he has been taking for three years after the coordinating hospital found out he had also been taking CBD. He has been using the plant-based treatment since he first began experiencing symptoms.
She says Cyclodextrin, the experimental treatment, has been effective in treating his disorder. It was approved directly by the FDA. “When there’s nothing else out there to save his life, the FDA will approve an experimental medicine, and he’s been on it for almost three years,” Kathy told High Times.
She says it’s “definitely working.”
She also believes the CBD is helping reduce his seizures. He has been using it under the supervision of his primary neurologist and initially received a prescription for it from his pediatric neurologist, Dr. Ralph Northam, who is now the governor of Virginia (in Virginia, cannabis oil was approved to treat “intractable epilepsy in 2015, and lawmakers are currently crafting legislation to allow the use of non-psychoactive cannabis oils for a broader range of conditions). This prescription has allowed him to access a more potent version of the drug. Kathy says she told Kaden’s primary neurologist that it “seems to be working great” and says CBD comes with far fewer side effects than traditional anti-seizure medications.
But when Virginia Commonwealth University Medical Center contacted her to tell her Kaden would be taken off Cyclodextrin if he continued to take CBD, Kathy removed CBD from his regimen. “Off CBD, Kaden experiences many seizures. He has since fractured his skull, concussed himself, and developed two blood clots in his brain,” High Times summarized.