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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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August 20 Ana Watson has decided to try adding THC to Preston’s CBD oil, which will change the ratio of doses she gives him.
It was about a month before the move away from their little brick house in Greensboro, N.C., and, sometime in the night before, Preston left his own bed and sleepwalked into Ana’s. Sydney was already there. When Ana woke before dawn, she was nestled between children.
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“But you have to be careful that you’re not making things in your brain,” she said. “We’re all watching him and his behavior.”
But no doctor at Children’s recommends using cannabis or gives more than cautious advice about it.
So now Ana is sitting in the hospital whose doctors have been the most outspoken in Colorado in urging parents not to use marijuana to control seizures — it’s too risky, they say; there are too many unknowns — and she is hoping for advice on what to do.
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June 18 A few days before moving to Colorado in search of new treatments for Preston, Ana takes the family to the shore in North Carolina for a short vacation.
July 5 Preston wakes up for a moment during a series of myoclonic cluster seizures caused by Dravet syndrome. Preston can have hundreds of “blinky” or “butterfly” seizures per session. If the cycle is not broken, it can lead to grand mal seizures.
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July 1 Don Raynor and daughter Ana Watson go over the real estate application for a house Ana wants to rent in Colorado Springs. Don reads everything very carefully: He is worried about Ana being so far from home and whether her income will cover everything she and the kids will need.
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“Keppra often causes behavioral issues,” the doctor responds.
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