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Ana is trying a new way of giving Preston his oil
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Sitting in the hospital meeting room, Greenwood said there was little more he could do for Preston with the medicines available. Without something new, Preston’s seizures would continue into adulthood — assuming he didn’t die before then.
“The journey” is the title of this new section in the book.
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On the next page is a picture of Preston with his head swaddled in gauze, a thick bundle of electrical wires poking out of the top of the wrapping like a bizarre ponytail.
Leaving Children’s after the first visit, Ana still has questions about CBD. But doctors there have set up several new appointments to address other aspects of Preston’s care. He will soon have a feeding tube inserted into his stomach, allowing Ana to give him food and medicine consistently. She’ll take him to get fitted for a new helmet to protect him in falls.
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The journey would be harder and more complicated than she ever imagined.
As a pediatric neurologist, Greenwood had treated hundreds of kids with epilepsy in his 37-year career. But Preston’s case was a unique challenge.
May 12 Preston spits out his seizure medications, which were mixed with sweet tea. He took the first few squirts easily, but as more of the undissolved pills filled the syringe, the taste and texture became much worse. Preston’s meds have been masked in everything imaginable — sweets, ice cream, whipped cream, ranch dressing — which he eats on almost everything. But all attempts are less and less effective.
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She was giving Preston a bath — not his first, not unusual. But then his eyes rolled back in his head and his face went white and his little body began to shake and Ana was certain he was dying. At the hospital, doctors quickly sent her home. Lots of kids have random seizures that never recur, they said. But Preston’s did.
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Public support for the legalization of marijuana dipped during the 1980s, but has grown dramatically in the past 45 years.
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While some can be treated by targeting the specific areas of the brain where the seizures’ electrical overloads originate, Dravet’s seizures come from everywhere, the result of a genetic mutation that occurs in every nerve cell in the brain.
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