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Preston helps “Paw Paw” Don Raynor
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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Dravet isn’t like other epilepsies.
Preston’s legs folded under him, and he crashed hard to the ground. Milly burst from her chair and ran over to him, reaching him in time to see his eyes roll toward his brows. And then, lying there in the grass he had soaked, Preston began to shake violently.
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October 7 Working to improve his hand-eye coordination, Preston concentrates on popping bubbles with one finger during occupational therapy at home with Kate Vovato, a therapist from MGA Home Healthcare.
Her bookshelf at home charted the journey and spoke to her struggle. First came “What to Expect in the First Year.” Then “Keeping Faith.” Then “Delmar’s Drug Reference for Health Care Professionals.” Then “Three Weeks to Say Goodbye.”
CBD is one of more than 80 active cannabinoid chemicals in the marijuana plant.ii Unlike the main psychoactive cannabinoid in marijuana, tetrahydrocannabinol (THC), CBD does not produce euphoria or intoxication.iii,iv,v Cannabinoids have their effect mainly by interacting with specific receptors on cells in the brain and body: the CB1 receptor, found on neurons and glial cells in various parts of the brain, and the CB2 receptor, found mainly in the body’s immune system. The euphoric effects of THC are caused by its activation of CB1 receptors. CBD has a very low affinity for these receptors (100 fold less than THC) and when it binds it produces little to no effect. There is also growing evidence that CBD acts on other brain signaling systems, and that these actions may be important contributors to its therapeutic effects.ii
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“An uncontrolled experiment”
Even as families flock to the state, few doctors here condone the use of marijuana to treat seizures. And that means the very people on whom families depend for medical advice are often silent when it comes to critical questions about the new treatment.
It took 12 days after arriving in Colorado for Ana to get the marijuana oil for Preston’s first dose. Twelve days of waiting. Twelve days of seizing. Twelve days of wondering what would happen.
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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.”
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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So, one morning in mid-October, Ana Watson cues up Jason Aldean’s “Big Green Tractor” on her phone and hands it to her 12-year-old son, still in his pajamas. And then something magical happens.
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The results from the first batch of CBD kids tested made their way into a study that Knupp and two other doctors will present this week at the American Epilepsy Society conference in Seattle. Of the 58 children tested, 31 percent saw their seizures reduce by half, the study found. About 50 percent of the patients saw at least some seizure reduction.
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