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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.
Step 2: Two separate doctors must recommend that the child use marijuana. Doctors can make the recommendation only if they diagnose the child with one of eight con***ions: cancer, HIV, glaucoma, cachexia, persistent muscle spasms, seizures, severe nausea or severe pain.
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The result of that one-sided conversation, though, is that parents who give CBD to their children must turn to one another and their medical marijuana providers for help. Facebook has become a crowd-sourced doctor’s office. Colorado’s sometimes ragtag community of medical marijuana growers acts as a de facto human services agency.
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April 15 Ana Watson meets with Jason Cranford at his Rifle Mountain Dispensary grow in Boulder. Ana is visiting from North Carolina to change her residency and apply for her medical marijuana red card to use the CBD oil to try to control the seizures her son, Preston, suffers because of Dravet syndrome.
July 24 Preston gently touches his friend Hailey McGuire as she rests at his home. Hailey, Tami King’s daughter, also has Dravet syndrome. King had stopped at Watson’s home for the comfort of a friend after a doctor’s visit at which Hailey had her seventh grand mal seizure since 2 a.m. and is “still in seizure mode” as Tami calls it. There is a connection between Dravet mothers, but there also seems to be a deep understanding between Dravet kids.
October 26 Preston has been eyeing his sister’s bike for a long time, taking every chance to sit on it when he could. On his 13th birthday, he finally has one of his own, with big training wheels.
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Families who brought their sick children to Colorado seeking a marijuana miracle found something else: each other. With doctors largely standing on the sidelines, the parents’ cannabis community offers camaraderie and support as they treat their kids.
“There is at least one basic science study that suggests CBD could be an effective anticonvulsant,” he said. “It has some promise, but at this point, unfortunately, it's not well studied enough to understand side effects and the long term benefits ratio of using this.”
October 8 Horticulturist Penn Mattison cuts down stubby round cannabis plants during the Realm of Caring hemp harvest. The Stanley brothers planted 17 acres of marijuana strains with below 0.3 percent THC. The plants qualify as hemp under Colorado’s laws for marijuana legalization.
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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.
Just to get to this moment in July, she had to uproot her family and move across the country from North Carolina to Colorado, one of the few places where the new and unregulated treatment is at least somewhat legal. She’s committing a federal crime just for trying.
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Seven months and 1,600 miles after their journey began, Ana has finally given Preston his first dose of marijuana.
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It took 12 days after arriving in Colorado for Ana to get the marijuana oil for Preston’s first dose. Twelve days of waiting. Twelve days of seizing. Twelve days of wondering what would happen.
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