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“The big thing that parents are always saying,” Ana said, “is they want their child to say, ‘I love you.’ ”
Ana Watson watches as Preston gets his first dose
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“Help,” Ana writes in a Facebook message to the community of parents who have tried the same treatment. “He is spitting it out and gagging. Can I mix it with food, give rectal? Any suggestions?????”
Ana tries to keep her daydreams in check. What good is it to view her child as something he’s not? But there is one thing she hears the parents of Dravet children often say, and, yes, she hesitantly admitted, she would like it, too.
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July 11 Sydney Watson, 8, tries to get older brother, Preston, to drink some sweet tea. Sydney was Preston’s little nurse when they were younger, helping her mother care for him. Preston hasn’t been eating very well or taking medications without a fight lately, and Ana asked Sydney to help.
To Ana, it sometimes seemed as if what epilepsy didn’t take from her son, the drugs would. But she also knew that just one year of uncontrolled seizures meant a 1 percent chance of dying. The longer Preston’s seizures ran riot, the likelier epilepsy would kill him.
By not engaging more with providers, doctors often lack an understanding of the types of marijuana products their patients are using and are unaware of the sometimes contradictory advice their patients receive.
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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.
“I know!” Ana pleads. “I’m sorry!”
A faint smell of cow manure wafts in the breeze as Ana pulls her minivan up to a house in eastern Boulder County.
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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.”
“You know you’re fighting for your child,” she said. “You just do whatever it takes to get what you need for your child. People slack off. You have to stay on top of them.”
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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.”
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“OK,” Ana says as she fills the capsules. “It’s not going to be pretty.”
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