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July 9 Ana Watson finally is able to get CBD oil for Preston. The journey hasn’t been without frustration. She has had to fill out many forms and file a change-of-patient record for the medical marijuana registry. She now is overwhelmed with worries: how much to buy and when; how strong it will be; how much to give Preston; whether to add THC.
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Cannabidiol (CBD) is one of the many chemicals in marijuana. Recent publicity about children who suffer from seizures benefitting from oil extracted from marijuana that has almost no THC has set off a wave of legislation like never seen before. Now state reps can favor marijuana without the fear of people getting high from it. This explains why so many Republicans are sponsoring these bills.
Dr. Edward Maa, an epilepsy specialist at Denver Health Medical Center, worked with the most famous CBD provider in Colorado, the Realm of Caring, and a Colorado Springs medical marijuana doctor on a patient survey — one of the earliest studies on the efficacy of CBD in the state. The study found that nine out of the 11 families surveyed saw at least a 75 percent reduction in seizures. It was an overwhelming success rate.
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A bundle of 21 multicolored electrical wires poke from the top of a wrapping on Preston’s head, running off the bed and to the computer. Every gesture, every word, every eye blink shows up as activity on the screen, where blue, maroon and green lines measure Preston’s brain activity. It is one answer to the question that has vexed Ana for the past 12 years: What is happening inside her son’s head?
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.
Preston’s grandmother supports his head
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July 17 A nurse stops in for a quick check on Preston’s incisions and tube during his EEG while he is snuggling with his mother, Ana Watson, at Children’s Hospital in Aurora.
In the next week, blinky seizures will overwhelm Preston each afternoon. A week after that, Ana will write on Facebook, “Preston started a new ratio oil yesterday higher THC, today only being on it for the second day we saw 70-80 percent seizure reduction!!! BAM!!!! Bite that seizures!!!!” And then a week after that, Preston will have three grand mals in a day. A roller coaster, Ana will call it.
No agency thoroughly regulates the treatment providers, beyond basic licensing. No rules govern the right formulation or dosage of the marijuana extract at the core of the treatment. No studies conclusively document the side effects.
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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.
What is clear is that this system of receptors is critical to human health. We need cannabinoids in the same way that we need vitamins. They are part of a healthy lifestyle.
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Preston’s baby book begins with pictures from a sonogram.
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