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“The point of this is to get a baseline,” Knupp had told Ana, “so that after you’re on CBD, you can have a baseline to look at.”
“Is that the one that causes the rash?” Ana asks.
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July 17 A nurse stops in for a quick check on Preston’s incisions and tube during his EEG while he is snuggling with his mother, Ana Watson, at Children’s Hospital in Aurora.
Ana and Preston head off to school
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It wasn’t until his second year of life that Ana began to notice the toll the seizures were taking. When other kids Preston’s age were learning more words and stringing them into sentences, he didn’t. When walking and grasping led to running and catching for other children, it didn’t for Preston. It was as though his life ground to a stop, even as time ticked on.
June 30 Ana Watson blocks the door to keep Preston inside during an interview to evaluate the type and amount of care he will need in Colorado. Jennifer White, a clinical supervising nurse with the Certified Nursing Assistant division, and Mike Quintana, account manager with MGA Home Healthcare, base their assessment on state guidelines to provide for Preston’s medical needs.
“He needs to learn to take it!” Ana says.
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But, to get a true starting level, the EEG meant Ana would need to take Preston off CBD temporarily. She had spent seven months planning how to get to Colorado for the treatment. She was pausing it after five days.
May 8 Ana Watson has to keep a tight rein on her son, Preston, as they head off to school. “He is fearless,” she said. “He will walk straight off of the steps without looking down to see where he’s going.” Preston also acts totally on impulse “if he sees something he wants. Or if he gets a chance, he will run right after it — and he’s fast.”
He had 200 seizures Monday through Thursday, so bad he lost his swallowing reflex,” Lynch said. “I have 25 known drugs that he had to be put in a medically induced coma and these are all FDA approved and the side effects are just horrible.
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Preston is talking.
Pushing ahead
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Preston spits out his seizure medications
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The government safety sheets for each drug listed dozens of side effects. Tremors. Problems with walking or coordination. A potentially fatal rash. Panic attacks. Thoughts of suicide. Aggression.
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