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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.
Ana finally is able to get CBD oil
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Related: Researchers bemoan roadblocks to medical marijuana research
Was it working?
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This is marijuana that often comes in medicine bottles, an oil extract from cannabis plants that is frequently squirted under a patient’s tongue. It’s the opposite of most commercial cannabis. Rather than being high in THC — the plant’s psychoactive chemical — the marijuana is low in THC and rich in CBD, a compound that does not get users stoned but has shown medicinal potential.
April 13 Jessica Raynor, Preston’s aunt, reads him a bedtime story during a trip to Colorado Springs ahead of the family move. Ana, Jessica and Preston made the trip to Colorado to apply for Preston’s medical marijuana card.
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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In the five weeks since Preston left the hospital, Ana has restarted him on CBD — now shooting it efficiently into his feeding tube. Preston went the first two weeks without suffering a grand mal, but his blinky seizures remained.
Things are looking up at the RV park
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.
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“The vast majority of people, if they were going to respond, had a dramatic reduction of seizures,” Maa said. “That doesn’t represent the larger, global number of people who had exposure to it. We don’t know those true numbers yet.”
Ana gives Preston his CBD oil
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Children have arrived here nearly lifeless. Families have lived out of motels when they couldn’t find housing. Parents have shown up at a medical marijuana provider’s house in the middle of the night.
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What is CBD, and how is it taken?
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