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No agency thoroughly regulates the treatment providers, beyond basic licensing. No rules govern the right formulation or dosage of the marijuana extract at the core of the treatment. No studies conclusively document the side effects.
May 9 Preston’s at-home nurse Sheila Wall keeps watch after a sudden cloudburst while picking strawberries. Excitement and the quick drop in temperature brought on almost nonstop myoclonic seizures that Preston’s mother, Ana, fears may turn into a full grand mal seizure before they get home.
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The results from the first batch of CBD kids tested made their way into a study that Knupp and two other doctors will present this week at the American Epilepsy Society conference in Seattle. Of the 58 children tested, 31 percent saw their seizures reduce by half, the study found. About 50 percent of the patients saw at least some seizure reduction.
Soon, Jason hands Ana new bottles of cannabis oil. This time, he’s giving her one bottle of high-CBD oil and another bottle containing high-THC.
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So, the entire day after that first dose, Ana watched Preston like a poker player looking for a tell.
A faint smell of cow manure wafts in the breeze as Ana pulls her minivan up to a house in eastern Boulder County.
Some epilepsies respond well to generalized anti-seizure drugs. But the specific genetic mutation of each Dravet patient is different, meaning what works for some won’t work for others. Preston has at least four different kinds of seizure types, and they varied in severity and frequency as he grew older.
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Yet these are gross simplifications and misrepresentations of the truth. The reality is much, much more layered than this caricature. It is not cannabis that can be dangerous to mental health and our brains, it is an excess of THC with insufficient CBD. Unfortunately, many modern day strains of cannabis contain vast quantities of THC and minimal quantities of CBD – and these strains are not medicinal. However they’re also not representative of the cannabis plant in its natural form. These strains are mutated cannabis plants bred to give the maximum intoxication, and with the health benefits bred out of the plant.
August 8 Milly supports Preston’s head, trying to calm Preston as he comes out of a grand mal seizure. Preston was playing with a water slide in the back yard when he fell and began to seize. A doctor’s appointment the next day reveals a broken bone in his foot.
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They started with a drug called Depakote when Preston was 3 months old. But the seizures continued — as did the new treatments: Klonopin and Felbatol and Keppra. Zonegran and Topamax and Diamox and Banzel. Vitamin infusions. A special high-fat diet. An implanted electrical nerve stimulator. There were two other drugs not yet fully approved by the federal government that cost hundreds of dollars a month. There was another that has also been suggested for use in executions.
And so this was the logical next step. A leap into the unknown.
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Schedule 1 drugs (which are illegal and include LSD and heroin) are said to have "no currently accepted medical use and a high potential for abuse." The announcement published in the Federal Register last week details the new ruling for CBD, which sets aside a new code number for "marihuana extract" and pertains to any "extract containing one or more cannabinoids ... derived from any plant of the genus Cannabis." This decision came despite the fact that CBD from hemp—cannabis with no more than between 0.3% and 1% of the active ingredient THC—has been widely available up till now via mail order and the internet.
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