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While some can be treated by targeting the specific areas of the brain where the seizures’ electrical overloads originate, Dravet’s seizures come from everywhere, the result of a genetic mutation that occurs in every nerve cell in the brain.
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In May 2014, Gov. Bill Haslam signed a bill that directs Tennessee Tech University to create a research program to study the efficacy of CBD oil used to prevent seizures, making Tennessee the sixth state to legalize CBD oil. The University is required to provide oil to other schools of medicine. All research must be completed by 2018.
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The shaking calmed.
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.
It was about a month before the move away from their little brick house in Greensboro, N.C., and, sometime in the night before, Preston left his own bed and sleepwalked into Ana’s. Sydney was already there. When Ana woke before dawn, she was nestled between children.
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The hospital didn’t see any improvement in the before-and-after EEGs of four kids whose seizures appeared to lessen significantly. That may have been due to something called “electroclinical dissociation,” where the seizure still occurs but its outward indicators disappear. It also might be that parents can pick up on smaller improvements than an EEG can, said Dr. Kevin Chapman, a pediatric neurologist at Children’s who was a co-author on the study.
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.
Walking toward him, she had no idea of the frustration ahead, and no inkling of the discomfort she would inflict on them both in her effort to bring relief. All she knew as she looked toward her seizing son was that she held in her hands the latest, best chance to move his life forward.
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Ana tries to bribe him with his favorite YouTube videos — “I’ll press play if you take a bite.” He still refuses.
He leans in to give her a kiss on the cheek. A maroon line on the computer screen jumps to life.
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July 16 “Oma,” Preston’s grandmother Milly, watches as nurses prepare him for surgery at Children’s Hospital in Aurora. For weeks he has not been eating well or getting his full amount of seizure medications. Preston went in for an appointment to meet his neurologist that turned into an operation for a gastrostomy tube and a 24-hour EEG. His mother, Ana Watson, had to stop giving him the CBD oil so they could get a good baseline EEG.
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Ana married, and Sydney was born. She and her husband fell into debt, in part because of medical bills before Preston qualified for Medicaid. Their marriage collapsed under the stress, and Ana moved back in with her parents. She tried working full time, then cut back to part time.
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