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Sadly at this point most of us are unable to buy strains like Charlotte’s Web due to cannabis prohibition. Yet, medical cannabis has been growing quickly as a movement, and so if you live in a state or country where medical cannabis has been legalized it may be possible to get CBD made from cannabis flowers. However until the prohibition of cannabis finally ends it will remain a challenge for most of us.
Ana’s mom, Milly, stirs more medicine into ice cream and brings it over. But Preston won’t eat.
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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.
Her bookshelf at home charted the journey and spoke to her struggle. First came “What to Expect in the First Year.” Then “Keeping Faith.” Then “Delmar’s Drug Reference for Health Care Professionals.” Then “Three Weeks to Say Goodbye.”
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By many people – I would think significantly more than 50% of people in this country – cannabis is still thought of this way: it is called a dangerous “narcotic”. It is thought to lower IQ and make people lazy. It is thought to induce psychosis.
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Then the next day, Preston suffered a grand mal seizure that left him writhing violently. He had another one the day after that. Getting him to eat or drink had become nearly impossible, and that meant he wasn’t getting consistent doses of either the CBD treatment or his tra***ional medications, both of which Ana tried to hide in Preston’s food or sweet tea.
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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.
In a lab in Seattle, black mice twitch uncontrollably as they work their way through an electrified cage, furry little avatars of kids with Dravet syndrome...
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Sometimes, Greenwood and Ana would find a medicine that worked for Preston. The seizures would lessen and Preston would start to walk more steadily. But, just as quickly, Preston’s brain would rewire itself back to a broken state and the seizures would return.
“Wha doin’?” he shouted between seizures, because he didn’t know what it meant for the movers to be there.
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A desperate hope and well-publicized stories about kids who have responded to the drug drive the families here, despite scant research on CBD’s overall efficacy. Scientists know so little about the treatment that it’s not even clear what CBD might do in the brain to impact seizures.
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“What I always tell people is you have to be really careful,” said Dr. Larry Wolk, the executive director of the Colorado Department of Public Health and Environment. “They have to know that it’s outside of the regulatory process, outside of the (Food and Drug Administration), and it’s very much ‘Buyer beware.’”
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