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July 7 Preston, curious about everything, watches his new pediatrician, Dr. Edward Maynard, adding notes from the 12-year-old’s first visit and examination at Iron Horse Pediatrics in Colorado Springs. Doctors, hospitals, nurses and tests have been a part of Preston’s life since he was diagnosed with Dravet syndrome as a baby.
Doctors at Children’s Hospital Colorado recommend that kids with epilepsy get a baseline EEG before beginning CBD treatments. Doctors then ask patients to follow up with another EEG three or four months later to gauge if any changes have occurred. EEGs aren’t sensitive enough to pick up on all improvements — such as if a child begins using new words. But doctors believe it is a good way to measure big changes. “If your EEG is abnormal, it’s probably going to be pretty hard to be a good student,” said Dr. Kevin Chapman, a neurologist at Children’s.
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Graphic: Mapping Preston’s seizures
“Yes, that’s what we got with that,” Ana says.
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“Time to get up, Boo-Boo,” Ana said to him. “Come on.”
A family photograph of Preston as a baby
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Andrew Tobey waits for Cody Morehead
July 3 Preston gives his mother a suspicious look as she tries to offer him ice cream with an M&M on top. He knows she is trying to give him his afternoon medications; after years of this working for their family, Preston has stopped falling for the ruse and fights it every time.
Medical marijuana has made Colorado a promised land for desperate parents trying to save their children.
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A desperate hope and well-publicized stories about kids who have responded to the drug drive the families here, despite scant research on CBD’s overall efficacy. Scientists know so little about the treatment that it’s not even clear what CBD might do in the brain to impact seizures.
“I know!” Ana pleads. “I’m sorry!”
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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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This is marijuana that often comes in medicine bottles, an oil extract from cannabis plants that is frequently squirted under a patient’s tongue. It’s the opposite of most commercial cannabis. Rather than being high in THC — the plant’s psychoactive chemical — the marijuana is low in THC and rich in CBD, a compound that does not get users stoned but has shown medicinal potential.
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