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May 12 Preston pulls back toward the lunchroom with Regina Lane, his in-school nurse, as he hears a friend in the hallway. Regina has been with Preston for five years. She knows that if something catches his attention, he will head in that direction. She also knows how to persuade him to focus on what he might be doing.
“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.”
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Also known as cannabis oil or cannabidiol, industrial hemp oil has been growing in popularity as a self-treatment option for many people suffering from emotional or physical discomfort. While sometimes compared to medical marijuana, industrial hemp oil is not illegal, nor is it a psychotropic drug. Although cannabidiol is an ingredient in both regular and medical marijuana, the main component, THC, is only present in very small traces in cannabidiol cannabis oil. While some people may come across industrial hemp oil by looking for marijuana oil for sale, marijuana CBD is not the same. As mentioned, industrial hemp oil is not a drug, nor does it contain enough THC to produce a psychotropic effect.
It wasn’t until Preston was 6 years old that doctors finally put a name to his con***ion: Dravet syndrome. And in some ways, that was worse than not knowing at all because it meant there was no cure to find.
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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.
July 4 “Paw Paw” Don Raynor, crossing off projects on his to- do list, is just another chance for Preston to get a horsey ride. With most of the moving and assembling done, Don will be leaving his daughter and grandson in the morning for the long ride back to North Carolina.
Sometimes, Greenwood and Ana would find a medicine that worked for Preston. The seizures would lessen and Preston would start to walk more steadily. But, just as quickly, Preston’s brain would rewire itself back to a broken state and the seizures would return.
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Some physicians are now stepping forward to work with providers on clinical trials for CBD, and doctors at Children’s have begun recording more specific details of the CBD products their patients are using — who is providing the medical marijuana and how much the child is taking, for instance. But the broader dynamic still hinders the study of CBD’s effectiveness. And that only increases the uncertainty that hangs over families such as Ana’s in their Colorado exile.
They started with a drug called Depakote when Preston was 3 months old. But the seizures continued — as did the new treatments: Klonopin and Felbatol and Keppra. Zonegran and Topamax and Diamox and Banzel. Vitamin infusions. A special high-fat diet. An implanted electrical nerve stimulator. There were two other drugs not yet fully approved by the federal government that cost hundreds of dollars a month. There was another that has also been suggested for use in executions.
Preston’s grandmother supports his head
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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.
May 9 Preston’s at-home nurse Sheila Wall keeps watch after a sudden cloudburst while picking strawberries. Excitement and the quick drop in temperature brought on almost nonstop myoclonic seizures that Preston’s mother, Ana, fears may turn into a full grand mal seizure before they get home.
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“For the doctor to know what they need to know about an illegal drug is a very high expectation,” said Dr. Jacqueline French, an epilepsy specialist at New York University’s Langone Medical Center. She said CBD is “driving the conversation” many doctors now have with their patients.
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Smaller numbers of children in California and other states have also begun to use marijuana to treat seizures. But what makes Colorado the epicenter is the state’s large medical marijuana system, which allows for kids to be registered patients; the growing community of families with sick children; and the feedback loop of publicity that surrounds the treatment. Every happy story about a family seeing success with cannabis in Colorado pushes another family to move here.
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