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May 29 Jon Stanley follows a carefully designed watering schedule for the cloned plants and the more mature high-CBD strains of cannabis in their vegetative state. Preston starts singing. July 25 Preston isn’t feeling well and took to the couch, but sister Sydney decided he needed a little cheering up by playing swoosh with his blanket. She’s learning that when it comes to Preston’s treatment, traditional medicine and marijuana have at least this much in common: There are still far more questions than answers. “No. Not yet.” A desperate hope and well-publicized stories about kids who have responded to the drug drive the families here, despite scant research on CBD’s overall efficacy. Scientists know so little about the treatment that it’s not even clear what CBD might do in the brain to impact seizures. Since then, she says he has had far fewer seizures and is able to sleep through the night. However it is not just a matter of bureaucratic labeling. It is a question of life and death. Due to cannabis being scheduled this way it is almost impossible for medical research into cannabinoids to take place. The DEA has the power to prevent scientists from studying these compounds – and they have done just that. The DEA has systematically and ruthlessly prevented scientists from working with cannabinoids, and the consequences have been tragic. 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. But, even now, the seizures remain a mystery. Some little eye-flutter seizures cause leaping spikes on the screen. Some seem to skip by without a change in the pattern. So chaotic is Preston’s brain that, looking later at the electroencephalogram, or EEG, doctors will have a hard time telling from the readings when he was awake and when he was asleep, when he was seizing and when he was still. She also began giving him his traditional seizure medicines spread out over three doses a day instead of two, and Preston was also receiving intensive therapies for speech and life skills. Somewhere in that mix, a harmony emerged. “You’re overdoing it,” Milly admonishes. “Skipping it is not going to hurt him.” At the end of their first visit, Dr. Kelly Knupp, Preston’s new neurologist at Children’s, suggested the EEG so that the hospital could have some starting record of Preston’s brain activity. The timing worked; Preston was already in the hospital, after the feeding tube surgery the day before. “It’s a boy!” the sticker on the page proclaims. “Why did we even come down here if he’s not going to take it!?” she snaps. Let’s use hemp to make paper and textiles. Let’s use cannabis to make our CBD medicine. It was subtle. But Ana swore there was a change in her son. He was more talkative, more stable on his feet. “The point of this is to get a baseline,” Knupp had told Ana, “so that after you’re on CBD, you can have a baseline to look at.” The doctor looks at her list. She looks sympathetically at Ana.
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