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“We worry about all the stresses that families had to go through to start the treatment,” Chapman said. “That desire for it to be effective may cloud their recognition of seizures.”
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.
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The doctor continues down the list of anti-epilepsy medications, collecting the medical history of Ana’s 12-year-old son, Preston, whose seizures cause such unrelenting brain damage that he functions at the level of a 2-year-old. The doctor ticks through 13 different medicines, but Preston has already tried each one, to little effect.
“Silly Preston,” she says back.
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Ana Watson and her family moved from North Carolina to Colorado with the dream that medical marijuana would help her son, Preston, and stop his relentless seizures. Their journey was harder than they expected. The answers were more elusive than the happy anecdotes seemed to promise. But they kept pressing forward because they said they had no other choice. Because Colorado was the only hope they had left.
“We’ve tried it all”
July 9 Ana Watson finally is able to get CBD oil for Preston. The journey hasn’t been without frustration. She has had to fill out many forms and file a change-of-patient record for the medical marijuana registry. She now is overwhelmed with worries: how much to buy and when; how strong it will be; how much to give Preston; whether to add THC.
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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.
The doctor looks at her list. She looks sympathetically at Ana.
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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.
“We worry about all the stresses that families had to go through to start the treatment,” Chapman said. “That desire for it to be effective may cloud their recognition of seizures.”
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Preston’s grandmother supports his head
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