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While doctors at Children’s don’t exactly want their patients on CBD, they are eager to find out what it’s doing. Knupp told Ana that doctors at the hospital now recommend all patients have both an EEG and a bloodwork exam prior to starting CBD. They would like to run follow-up tests every three or four months.
Ana’s decision to move had seemed like an easy one. In late 2012, she saw on Facebook a video of a California man using medical marijuana to treat his son’s seizures. “This brought tears to my eyes!” she wrote then.
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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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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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There are the grand mals, known clinically as tonic-clonic seizures, that are full of violent convulsing that can last minutes. Preston falls into one about once a week. But much more common are the little eye flutters. In medical terms, they are called myoclonic seizures. Ana calls them “blinkies.” They look as though Preston is on the verge of sneezing.
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The government safety sheets for each drug listed dozens of side effects. Tremors. Problems with walking or coordination. A potentially fatal rash. Panic attacks. Thoughts of suicide. Aggression.
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May 29 High-CBD strains of cannabis grow under natural light. The Stanley brothers have specialized in breeding cannabis, including Charlotte’s Web, that is intended as medicine for Colorado Realm of Caring patients.
Two days later, they’re back again. A blue line squiggles furiously up and down on a computer screen.
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Slowly working his way through the potatoes, Preston’s hands stopped and his eyelids flickered for a few seconds before popping back open. The first seizure of the day had come and gone.
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