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The migration to Colorado by families of sick children seeking medical marijuana is fueled by hope, not science. Little is known about the treatment’s effects, and researchers suggest that some parents see progress because they’re desperate to see it.
But Ana’s jaw clenches.
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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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August 6 Preston’s grandmother, Milly Raynor, supports his head as she tries to untangle him from a hose he tripped over, and a seizure kicks in. The pain from the fall while playing with a water slide appears to have caused the grand mal seizure. A doctor’s appointment the next day reveals a broken bone in his foot.
July 5 Preston wakes up for a moment during a series of myoclonic cluster seizures caused by Dravet syndrome. Preston can have hundreds of “blinky” or “butterfly” seizures per session. If the cycle is not broken, it can lead to grand mal seizures.
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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.
A row of cannabis medicine bottles. Cannabis had been a popular medication, and was prescribed for many ailments before the 1937 “Marihuana Tax Act” effectively outlawed it.
At the end of their first visit, Dr. Kelly Knupp, Preston’s new neurologist at Children’s, suggested the EEG so that the hospital could have some starting record of Preston’s brain activity. The timing worked; Preston was already in the hospital, after the feeding tube surgery the day before.
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July 29 Preston meets Dr. Alan Shackelford at his office in Denver. He and his mother, Ana, are visiting the doctor for help with Preston’s dosing. Shackelford evaluated Preston’s physical con***ion, then went over his medical history with Ana and her mother to figure out a starting point to use the CBD oil.
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July 4 “We’ll try something different,” Don Raynor says as he holds Preston’s mouth closed and massages his throat while Ana holds her son’s head to get Preston to swallow his medication. Preston has refused to take his meds without a fight for a solid week, and everyone is worried and exhausted by the efforts to get him to take them. This didn’t work either: He spit them all out.
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