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Her new friends in Colorado — parents who, like her, came to the state seeking hope through cannabis — cheered on her social media updates.
August 6 Preston cries as Milly and his nurse, Chelle Bennett, try to remove his wet clothes and warm him with blankets. The pain from a fall while he was playing with a water slide appears to have caused a grand mal seizure.
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Schedule 1 drugs (which are illegal and include LSD and heroin) are said to have "no currently accepted medical use and a high potential for abuse." The announcement published in the Federal Register last week details the new ruling for CBD, which sets aside a new code number for "marihuana extract" and pertains to any "extract containing one or more cannabinoids ... derived from any plant of the genus Cannabis." This decision came despite the fact that CBD from hemp—cannabis with no more than between 0.3% and 1% of the active ingredient THC—has been widely available up till now via mail order and the internet.
September 3 Ana is trying a new way of giving Preston his oil. She is giving him straight THC by mouth separately from the CBD oil she gives him in his feeding tube. He hated it. She squirted it in and he started spitting and sputtering as soon as he tasted it. She ended up mixing it with formula and using his feeding tube. By using the oil separately she can figure his dosing ratios for tighter control.
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The problem is, that while the CBD content can be much higher in cannabis-sourced CBD, the THC level can also be higher. This THC level creates a problem with legality, as THC is considered a dangerous substance which is prohibited in nearly every country. Growers are working hard to maximize the CBD level and minimize the THC level, but the reality is that this plant naturally contains THC, and whether or not man writes a law forbidding it, nature isn’t likely to pay much attention to that law.
Ketogenic diet, the doctor asks?
April 15 Ana Watson keeps a sharp eye as Preston goes into a grand mal seizure on the frontage road near Castle Rock on Interstate 25 on their way from Colorado Springs to see Jason Cranford at his Rifle Mountain Dispensary grow in Boulder. Ana is visiting from North Carolina to change her residency and apply for a medical marijuana red card for Preson.
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Charlotte Dravet’s message to parents is simple: Don’t move.
“When these kids come, we hear a lot about it,” said Dr. Larry Wolk, head of the Colorado health department and a skeptic of the treatment’s success. “They get their CBD oil or their Charlotte’s Web. And if they respond, we continue to hear about it. If they don’t, they quickly disappear.”
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“What I always tell people is you have to be really careful,” said Dr. Larry Wolk, the executive director of the Colorado Department of Public Health and Environment. “They have to know that it’s outside of the regulatory process, outside of the (Food and Drug Administration), and it’s very much ‘Buyer beware.’”
October 26 Preston has been eyeing his sister’s bike for a long time, taking every chance to sit on it when he could. On his 13th birthday, he finally has one of his own, with big training wheels.
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The hospital didn’t see any improvement in the before-and-after EEGs of four kids whose seizures appeared to lessen significantly. That may have been due to something called “electroclinical dissociation,” where the seizure still occurs but its outward indicators disappear. It also might be that parents can pick up on smaller improvements than an EEG can, said Dr. Kevin Chapman, a pediatric neurologist at Children’s who was a co-author on the study.
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“We have a special squirt-squirt we need to do, OK?” Ana tells Preston, adopting a smile as she walks toward him. “You need to be a big boy.”
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