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Ana Watson and nurse Chelle Bennett carry Preston
There have been times Blake would have a seizure every half hour, and his mother, Stacy Lynch, would worry how he would get through the night.
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.
On June 3, 2014, Gov. Andrew Cuomo announced that the state has entered into an agreement with GW Pharmaceuticals to investigate the efficacy of cannabidiol use by children suffering from the seizure disorders Dravet's syndrome and Lennox-Gastuat syndrome. The clinical trials will take place at hospitals, universities and medical colleges. GW is already working with NYU's Langone Medical Center on a trial involving 60 children and their CBD product, Epidiolex. New York passed a broader medical marijuana bill on June 20.
“We pushed that too far, didn’t we?”
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
But the study also calls into question parents’ ability to be objective. The doctors found that parents who had moved to Colorado for medical marijuana were much more likely to report that it had helped their children significantly than those who were already living in Colorado — 52 percent compared with 17 percent. In other words, the greater the leap of hope it took to try CBD, the more likely a parent was to see progress.
October 8 The Realm of Caring drying warehouse is slowly filled with the plants from the 17-acre grow plot. This strain of marijuana has less than 0.3 percent THC and qualifies as hemp under Colorado’s marijuana laws.
In that time, Preston started feeding himself, using a fork without help. He pushed himself around on his sister’s two-wheel scooter without falling. He remembered to say “Please” and “Thank you.”
Ana eventually calls a friend, who suggests giving the medicine in emptied pill capsules delivered as a suppository. She grimaces. But she has already been at it for an hour. The odds that seizures will kill Preston increase every year; the damage in his brain may soon be permanent. She is compelled to try.
It sunds so much better than calling it an ordeal.
“We’ve pretty much tried everything else we can,” she reasoned.
After he harvests his marijuana plants, he hangs them over the arms of a weight bench in his front room, ready to be trimmed. He extracts the oil in a lab he assembled in his garage. When families arrive, his German shepherd is there to greet them.
Just to get to this moment in July, she had to uproot her family and move across the country from North Carolina to Colorado, one of the few places where the new and unregulated treatment is at least somewhat legal. She’s committing a federal crime just for trying.
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