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Being Preston’s mother taught her not to cry because tears won’t make her son better. For her, there is a process: Try one thing, then move on to the next. Lessons can be learned and applied.
July 12 Ana Watson measures 0.5mg per pound of body weight for Preston’s first dose of “Haleigh’s Hope,” a high-CBD oil she has been pinning her hopes on to help control his seizures and change his life.
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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.
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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Tami King and Ana Watson recheck dosing measurements
Ana doesn’t remember what Preston’s first word was. What she does remember is that first word arrived right on time. As did his first crawls. And his first steps.
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.
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“An uncontrolled experiment”
The result of that one-sided conversation, though, is that parents who give CBD to their children must turn to one another and their medical marijuana providers for help. Facebook has become a crowd-sourced doctor’s office. Colorado’s sometimes ragtag community of medical marijuana growers acts as a de facto human services agency.
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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Four months after they arrived in Colorado — one of hundreds of desperate families moving here for medical marijuana for their children — the seizures that restrain Preston at the developmental level of a 2-year-old have calmed. A tumultuous beginning has given way to a month-long stretch without a grand mal seizure.
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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The closer the move came, the worse Preston seemed to get. He suffered a grand mal seizure at the fundraiser Ana and her parents put together to raise the $15,000 needed for the move. He suffered another grand mal returning from a last-second beach getaway.
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