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“The vast majority of people, if they were going to respond, had a dramatic reduction of seizures,” Maa said. “That doesn’t represent the larger, global number of people who had exposure to it. We don’t know those true numbers yet.”
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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There are the grand mals, known clinically as tonic-clonic seizures, that are full of violent convulsing that can last minutes. Preston falls into one about once a week. But much more common are the little eye flutters. In medical terms, they are called myoclonic seizures. Ana calls them “blinkies.” They look as though Preston is on the verge of sneezing.
“That,” she breathed back in, “was pain.”
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On Apr. 16, 2014, Gov. Scott Walker signed AB 726 into law, making Wisconsin the fourth state to legalize CBD oil. It's unclear where and by whom the oil is going to be produced.
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.
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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She also began giving him his tra***ional seizure medicines spread out over three doses a day instead of two, and Preston was also receiving intensive therapies for speech and life skills. Somewhere in that mix, a harmony emerged.
August 20 Ana Watson gets a firsthand view of the trimming and drying process that goes into making the CBD oil she is using to treat her son, Preston.
One of approximately 70 cannabinoids found in cannabis, CBD (or cannabidiol) is non-toxic and non-intoxicating. Also of great importance, CBD has been shown to be an anti-oxidant, an anxiolytic (to have anti-anxiety effects), an anti-carcinogen (to have anti-cancer effects), an anti-psychotic, an anti-convulsive, an anti-spasmodic, and is also able to reduce seizures and reduce the effects of spasticity.
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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?
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“That,” she breathed back in, “was pain.”
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July 7 Preston, curious about everything, watches his new pediatrician, Dr. Edward Maynard, adding notes from the 12-year-old’s first visit and examination at Iron Horse Pediatrics in Colorado Springs. Doctors, hospitals, nurses and tests have been a part of Preston’s life since he was diagnosed with Dravet syndrome as a baby.
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