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“The big thing that parents are always saying,” Ana said, “is they want their child to say, ‘I love you.’ ”
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But, even now, the seizures remain a mystery. Some little eye-flutter seizures cause leaping spikes on the screen. Some seem to skip by without a change in the pattern. So chaotic is Preston’s brain that, looking later at the electroencephalogram, or EEG, doctors will have a hard time telling from the readings when he was awake and when he was asleep, when he was seizing and when he was still.
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“Silly mommy,” he says to Ana, as she snuggles into a single hospital bed with him.
Families who brought their sick children to Colorado seeking a marijuana miracle found something else: each other. With doctors largely standing on the sidelines, the parents’ cannabis community offers camaraderie and support as they treat their kids.
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.
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Ana Watson measures Preston’s first dose
“There is at least one basic science study that suggests CBD could be an effective anticonvulsant,” he said. “It has some promise, but at this point, unfortunately, it's not well studied enough to understand side effects and the long term benefits ratio of using this.”
She’s learning that when it comes to Preston’s treatment, tra***ional medicine and marijuana have at least this much in common: There are still far more questions than answers.
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A family photograph of Preston as a baby
At the end of their first visit, Dr. Kelly Knupp, Preston’s new neurologist at Children’s, suggested the EEG so that the hospital could have some starting record of Preston’s brain activity. The timing worked; Preston was already in the hospital, after the feeding tube surgery the day before.
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Watch Haleigh Cox was diagnosed with Lennox-Gastaut Syndrome as a baby. She is the namesake of “The Haleigh’s Hope Act,” a bill filed in Georgia to legalize cannabis oil high in CBD. The oil is used to control her seizures.
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“Oma” — Preston’s grandmother Milly Raynor
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