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A nurse stops in for a quick check
“We don’t make recommendations about the marijuana therapy because we don’t have the information to do that,” said Dr. Amy Brooks-Kayal, the head of pediatric neurology at Children’s. “We feel very strongly that we need to act on good medical and scientific evidence, and that doesn’t exist.”
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Bear in mind that the National Cancer Institute is part of the United States government’s own Department of Health. It is an extraordinary contradiction that while one department of government insists that cannabis has no medicinal uses another department is detailing the way cannabis kills cancer cells and shrinks tumors.
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Ana Watson measures Preston’s first dose
Kids using CBD don’t smoke it. Instead, it comes infused into a cooking oil, like olive or safflower oil. Typically, parents are told to squirt the oil under their children’s tongues. But some families mix it in food or give it through a feeding tube.
Leaving Children’s after the first visit, Ana still has questions about CBD. But doctors there have set up several new appointments to address other aspects of Preston’s care. He will soon have a feeding tube inserted into his stomach, allowing Ana to give him food and medicine consistently. She’ll take him to get fitted for a new helmet to protect him in falls.
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So now Ana is sitting in the hospital whose doctors have been the most outspoken in Colorado in urging parents not to use marijuana to control seizures — it’s too risky, they say; there are too many unknowns — and she is hoping for advice on what to do.
“Seizures all of the time”
“It’s OK,” Milly whispered into his ear, trying to talk him out of the seizure. “It’s OK.”
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Watch Haleigh Cox was diagnosed with Lennox-Gastaut Syndrome as a baby. She is the namesake of “The Haleigh’s Hope Act,” a bill filed in Georgia to legalize cannabis oil high in CBD. The oil is used to control her seizures.
A handful of organizations have sprouted in the past couple of years to offer support to parents moving to Colorado and those already here. Communities of families have grown up to provide advice and encouragement and a happy source of friendship.
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Ana returned to the kitchen and shakily exhaled.
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