For most people with epilepsy, diagnosis sets off a gauntlet of trial-and-error attempts to find the right medication. The process is tortuous, with seizures alternately dying down and flaring up while side effects— fatigue, nausea, liver damage, and more—develop without warning. This is partly due to the fact that “epilepsy” is actually a broad category that includes a number of distinct seizure disorders. About 30 medications approved by the U.S. Food and Drug Administration are currently used to treat these conditions, and when a person first begins having seizures, there is often much tinkering with combinations and dosages. I spent years battling side effects like vomiting, dizziness, drowsiness, and severe headaches, which were alleviated only by yet another prescription medication. Parents who endure enough sleepless nights caring for a sick child can become desperate for a cure.
There has been a fair amount of confusion surrounding the legality of CBD oil. But while the vast majority of cannabinoids are controlled substances under the Misuse of Drugs Act, rest assured that CBD oil is legal across the UK for medicinal purposes, provided it has been derived from an industrial hemp strain that is EU-approved. These strains contain very little to no THC (the psychoactive cannabinoid).
Jump up ^ Hayakawa K, Mishima K, Nozako M, Ogata A, Hazekawa M, Liu AX, Fujioka M, Abe K, Hasebe N, Egashira N, Iwasaki K, Fujiwara M (March 2007). "Repeated treatment with cannabidiol but not Delta9-tetrahydrocannabinol has a neuroprotective effect without the development of tolerance". Neuropharmacology. 52 (4): 1079–87. doi:10.1016/j.neuropharm.2006.11.005. PMID 17320118.
His parents took him to more than 20 doctors around the country, and he tried more than a dozen medications. Nothing worked. Two years ago, the Leydens were at the end of their rope. They decided to see whether marijuana might help. (Medical use of the drug is legal in the District, where they live, and the Leydens found a doctor willing to work with them.) In 2014, Jackson got his first dose of cannabis.
It was the seizures that tipped Penny off that something wasn’t right with Harper after she and her husband Dustin brought her home from the hospital as a newborn. Several months later, having tried a battery of epilepsy medications and still without a diagnosis, Penny and Dustin flew to Boston with Harper to see an expert in infant seizures. It was there they first heard of CDKL5. “This is the point where life changed significantly,” Penny said, “because now we had this diagnosis. You know, this abnormality in our family that we cannot fix.”
But all was not well. Harper has continued to experience health issues related to her condition. And seven months after starting to use CBD oil, Harper’s seizures returned— although not as frequently as before. Penny uses eleven iPhone reminders to keep track of Harper’s daily regimen of medications and food, and she records all of Harper’s seizures in a thickly bound black book. But as her parents continue to closely monitor Harper’s health and adjust her medications accordingly, her doctors are tightly limited in the advice they can offer when it comes to CBD oil. “There’s no research on this product, so they don’t say it’s good or bad. They just say, ‘Don’t stop giving it,’” Penny told me.
 M. H. N. Chagas, A. L. Eckeli, A. W. Zuardi, M. A. Pena-Pereira, M. A. Sobreira-Neto, E. T. Sobreira, M. R. Camilo, M. M. Bergamaschi, C. H. Schenck, J. E. C. Hallak, V. Tumas, and J. A. S. Crippa, “Cannabidiol Can Improve Complex Sleep-Related Behaviours Associated with Rapid Eye Movement Sleep Behaviour Disorder in Parkinson’s Disease Patients: A Case Series,” Journal of Clinical Pharmacy and Therapeutics 39 (2014): 564–566. doi:10.1111/jcpt.12179.
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