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The journey would be harder and more complicated than she ever imagined.
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Finally dragging Preston from bed, Ana sat him in his skull-and-crossbones pajamas in front of the television and turned on a video of Barney the dinosaur. Sydney walked by and scrunched up her face. She had already outgrown Barney.
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“Oma” — Preston’s grandmother Milly Raynor
A spectrum of illnesses afflict the children coming to Colorado for medical marijuana: cancer, autism, Crohn’s disease. Most, though, are seeking help for incurable forms of childhood epilepsy — diseases with names taken from medical-journal bylines: Dravet syndrome, Lennox-Gastaut syndrome and Doose syndrome.
“Yes,” Ana sighs, “we’ve tried everything.”
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Slowly working his way through the potatoes, Preston’s hands stopped and his eyelids flickered for a few seconds before popping back open. The first seizure of the day had come and gone.
“You’re overdoing it,” Milly admonishes. “Skipping it is not going to hurt him.”
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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Ana finally is able to get CBD oil
Ana tries to bribe him with his favorite YouTube videos — “I’ll press play if you take a bite.” He still refuses.
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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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