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“He is quite capable of going into a seizure that is basically all the time — all day and all night,” Greenwood said.
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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Ana doesn’t remember what Preston’s first word was. What she does remember is that first word arrived right on time. As did his first crawls. And his first steps.
“Have you tried Stiripentol?”
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“It’s a boy!” the sticker on the page proclaims.
By not engaging more with providers, doctors often lack an understanding of the types of marijuana products their patients are using and are unaware of the sometimes contradictory advice their patients receive.
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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.
As a pediatric neurologist, Greenwood had treated hundreds of kids with epilepsy in his 37-year career. But Preston’s case was a unique challenge.
“Stop arguing with me!” Ana finally says. “Damn.”
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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.
October 8 The Realm of Caring drying warehouse is slowly filled with the plants from the 17-acre grow plot. This strain of marijuana has less than 0.3 percent THC and qualifies as hemp under Colorado’s marijuana laws.
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On June 3, 2014, Gov. Andrew Cuomo announced that the state has entered into an agreement with GW Pharmaceuticals to investigate the efficacy of cannabidiol use by children suffering from the seizure disorders Dravet's syndrome and Lennox-Gastuat syndrome. The clinical trials will take place at hospitals, universities and medical colleges. GW is already working with NYU's Langone Medical Center on a trial involving 60 children and their CBD product, Epidiolex. New York passed a broader medical marijuana bill on June 20.
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Ana is tight beside Preston
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