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October 16 Preston rides and controls a scooter for the first time by himself in the open space in front of his home.
Even as families flock to the state, few doctors here condone the use of marijuana to treat seizures. And that means the very people on whom families depend for medical advice are often silent when it comes to critical questions about the new treatment.
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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.
[DGO] "Legal Alternative" to Medical Marijuana?
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July 1 Things are looking up at the RV park. Ana has found a house she wants to rent, and Preston found a computer chair he likes set out for free near the trash bin. Preston kept “Paw Paw” spinning him until he could spin no more.
A faint smell of cow manure wafts in the breeze as Ana pulls her minivan up to a house in eastern Boulder County.
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August 8 Milly supports Preston’s head, trying to calm Preston as he comes out of a grand mal seizure. Preston was playing with a water slide in the back yard when he fell and began to seize. A doctor’s appointment the next day reveals a broken bone in his foot.
Dravet isn’t like other epilepsies.
“An uncontrolled experiment”
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Some physicians are now stepping forward to work with providers on clinical trials for CBD, and doctors at Children’s have begun recording more specific details of the CBD products their patients are using — who is providing the medical marijuana and how much the child is taking, for instance. But the broader dynamic still hinders the study of CBD’s effectiveness. And that only increases the uncertainty that hangs over families such as Ana’s in their Colorado exile.
July 12 Ana Watson measures 0.5mg per pound of body weight for Preston’s first dose of “Haleigh’s Hope,” a high-CBD oil she has been pinning her hopes on to help control his seizures and change his life.
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Preston rests on his porch
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