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A national survey of doctors by the American Epilepsy Society found that while 94 percent said they have been asked by a patient about using cannabis to control seizures, fewer than a third would actually recommend that patients try it. Another 13 percent said they would support its use but would rather have another doctor provide the recommendation needed to obtain it.
“OK,” Ana said, “One more minute.”
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Some epilepsies respond well to generalized anti-seizure drugs. But the specific genetic mutation of each Dravet patient is different, meaning what works for some won’t work for others. Preston has at least four different kinds of seizure types, and they varied in severity and frequency as he grew older.
In advance of the move, Ana reduced the dose of one of the three main seizure medicines he takes — a drug called Onfi — because she had heard from other parents that CBD amplifies it. He was now taking about a third less than what Greenwood had prescribed, although she didn’t tell the doctor her plan.
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July 1 Things are looking up at the RV park. Ana has found a house she wants to rent, and Preston found a computer chair he likes set out for free near the trash bin. Preston kept “Paw Paw” spinning him until he could spin no more.
Ana Watson holds her son, Preston
Finally dragging Preston from bed, Ana sat him in his skull-and-crossbones pajamas in front of the television and turned on a video of Barney the dinosaur. Sydney walked by and scrunched up her face. She had already outgrown Barney.
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His hunting spared no one. He drenched Milly. Sydney escaped back inside, water dripping down her hair. And Preston laughed with such big gulps of air that it sounded as if his own joy might strangle him. Until, suddenly, his laughter stopped.
Kids using CBD don’t smoke it. Instead, it comes infused into a cooking oil, like olive or safflower oil. Typically, parents are told to squirt the oil under their children’s tongues. But some families mix it in food or give it through a feeding tube.
Instead, Preston turns his head side to side to avoid the dropper. Squirming on the couch next to his mother, he’s nearly as tall as she is. But hundreds of seizures a day have restrained his development to that of a 2-year-old. He is 12 years old, yet in many ways he’s a 70-pound toddler.
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November 5 Ana Watson and MGA Home Healthcare nurse Chelle carry Preston to a bean-bag chair. Preston has suffered continuous myoclonic clusters most of the day. He had a 30-second grand mal seizure early in the afternoon. Preston’s new normal is to go straight back into myoclonic clusters after a seizure. Dravet syndrome children usually have a variety of seizure types, which can change for a number of reasons.
Even if the treatment is successful, though, no one knows what will happen if kids who have seized their whole lives suddenly stop. Do they develop normally? Or does their underlying con***ion continue to inhibit their growth?
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Yet these are gross simplifications and misrepresentations of the truth. The reality is much, much more layered than this caricature. It is not cannabis that can be dangerous to mental health and our brains, it is an excess of THC with insufficient CBD. Unfortunately, many modern day strains of cannabis contain vast quantities of THC and minimal quantities of CBD – and these strains are not medicinal. However they’re also not representative of the cannabis plant in its natural form. These strains are mutated cannabis plants bred to give the maximum intoxication, and with the health benefits bred out of the plant.
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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.’”
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