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July 23 Physicians assistant Tom Dishion talks to Ana Watson and Milly Raynor at Iron Horse Pediatrics in Colorado Springs. Preston has been running a fever for three days, today at a steady 101.9. He has been complaining about his feeding button: “Out, out,” he says. They went from the clinic to an X-ray at Memorial Hospital to check the feeding tube placement.
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But no doctor at Children’s recommends using cannabis or gives more than cautious advice about it.
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July 23 An absent seizure looks and feels just like it sounds: Preston stopped interacting, staring into nothing, drool leaking from his mouth, his hands unmoving. It was a startling change from the blinking and jaw-working during his “normal” myoclonic clusters. Dravet syndrome children experience many types of seizures. The seizures can change, and some children will have a combination of seizure types, all during one episode.
CBD is one of more than 80 active cannabinoid chemicals in the marijuana plant.ii Unlike the main psychoactive cannabinoid in marijuana, tetrahydrocannabinol (THC), CBD does not produce euphoria or intoxication.iii,iv,v Cannabinoids have their effect mainly by interacting with specific receptors on cells in the brain and body: the CB1 receptor, found on neurons and glial cells in various parts of the brain, and the CB2 receptor, found mainly in the body’s immune system. The euphoric effects of THC are caused by its activation of CB1 receptors. CBD has a very low affinity for these receptors (100 fold less than THC) and when it binds it produces little to no effect. There is also growing evidence that CBD acts on other brain signaling systems, and that these actions may be important contributors to its therapeutic effects.ii
“He needs to learn to take it!” Ana says.
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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.
She had to wait another three days after picking up the oil for a lab report to come back to confirm its potency. When the day of the first dose finally arrived, in mid-July, Ana bounded into the kitchen of her new home to pull a bottle of the oil from the fridge.
Part 3
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A national survey of doctors by the American Epilepsy Society found that while 94 percent said they have been asked by a patient about using cannabis to control seizures, fewer than a third would actually recommend that patients try it. Another 13 percent said they would support its use but would rather have another doctor provide the recommendation needed to obtain it.
Ana Watson blocks the door to keep Preston inside
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Ana’s decision to move had seemed like an easy one. In late 2012, she saw on Facebook a video of a California man using medical marijuana to treat his son’s seizures. “This brought tears to my eyes!” she wrote then.
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Preston gives his mother a suspicious look
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