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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.
Watch Dr. Kelly Knupp explains what doctors discover by examining Preston’s electroencephalogram.
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It took 12 days after arriving in Colorado for Ana to get the marijuana oil for Preston’s first dose. Twelve days of waiting. Twelve days of seizing. Twelve days of wondering what would happen.
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A handful of organizations have sprouted in the past couple of years to offer support to parents moving to Colorado and those already here. Communities of families have grown up to provide advice and encouragement and a happy source of friendship.
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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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NBC 7 spoke to Dr. Steven Poceta who is a neurologist at Scripps Clinic Torrey Pines and the president-elect of the San Diego County Medical Society. He says some patients with epilepsy are using CBD, and there is some suggestion that the component is effective.
Since then, she says he has had far fewer seizures and is able to sleep through the night.
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“Time to get up, Boo-Boo,” Ana said to him. “Come on.”
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