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For instance, CBD providers commonly tell newly arrived parents that they should reduce the level of an anti-seizure drug called Onfi before starting CBD because the two could have a dangerous interaction. Parents often reduce the medicine without consulting with their doctors. Doctors at Children’s, though, say they haven’t seen conclusive evidence that CBD has an impact on Onfi levels. Meager research makes it impossible to know who is right.
It wasn’t until Preston was 6 years old that doctors finally put a name to his con***ion: Dravet syndrome. And in some ways, that was worse than not knowing at all because it meant there was no cure to find.
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The doctor looks at her list. She looks sympathetically at Ana.
Even if the treatment is successful, though, no one knows what will happen if kids who have seized their whole lives suddenly stop. Do they develop normally? Or does their underlying con***ion continue to inhibit their growth?
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Many of the families arriving in the state for medical marijuana — as well as those already living here — seek out the care of specialists at Children’s Hospital Colorado. About 100 kids who see doctors at the hospital have tried a CBD treatment.
Doctors at Children’s Hospital Colorado recommend that kids with epilepsy get a baseline EEG before beginning CBD treatments. Doctors then ask patients to follow up with another EEG three or four months later to gauge if any changes have occurred. EEGs aren’t sensitive enough to pick up on all improvements — such as if a child begins using new words. But doctors believe it is a good way to measure big changes. “If your EEG is abnormal, it’s probably going to be pretty hard to be a good student,” said Dr. Kevin Chapman, a neurologist at Children’s.
She’s learning that when it comes to Preston’s treatment, tra***ional medicine and marijuana have at least this much in common: There are still far more questions than answers.
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Families who brought their sick children to Colorado seeking a marijuana miracle found something else: each other. With doctors largely standing on the sidelines, the parents’ cannabis community offers camaraderie and support as they treat their kids.
August 20 Ana Watson gets a firsthand view of the trimming and drying process that goes into making the CBD oil she is using to treat her son, Preston.
July 1 Don Raynor and daughter Ana Watson go over the real estate application for a house Ana wants to rent in Colorado Springs. Don reads everything very carefully: He is worried about Ana being so far from home and whether her income will cover everything she and the kids will need.
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July 24 Preston gently touches his friend Hailey McGuire as she rests at his home. Hailey, Tami King’s daughter, also has Dravet syndrome. King had stopped at Watson’s home for the comfort of a friend after a doctor’s visit at which Hailey had her seventh grand mal seizure since 2 a.m. and is “still in seizure mode” as Tami calls it. There is a connection between Dravet mothers, but there also seems to be a deep understanding between Dravet kids.
On Apr. 11, 2014, Gov. Steve Beshear signed SB 124 into law, making Kentucky the third state to legalize CBD oil. On Mar. 12, Kentucky's Senate unanimously approved the bill, sponsored by Republican Sen. Julie Denton. On Mar, 26, the House did the same. The new law alows the University of Kentucky and University of Louisville med schools to conduct research into CBD oil and provide it to patients enrolled in the trial program.
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Smaller numbers of children in California and other states have also begun to use marijuana to treat seizures. But what makes Colorado the epicenter is the state’s large medical marijuana system, which allows for kids to be registered patients; the growing community of families with sick children; and the feedback loop of publicity that surrounds the treatment. Every happy story about a family seeing success with cannabis in Colorado pushes another family to move here.
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Step 2: Two separate doctors must recommend that the child use marijuana. Doctors can make the recommendation only if they diagnose the child with one of eight con***ions: cancer, HIV, glaucoma, cachexia, persistent muscle spasms, seizures, severe nausea or severe pain.
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