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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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“It’s OK,” she whispers. “It’s OK, Boo-Boo.”
Ana Watson measures Preston’s first dose
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“Is that the one that causes the rash?” Ana asks.
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.
At the North Carolina Children’s Hospital in Chapel Hill in May, Dr. Robert Greenwood hustled into the meeting room wearing a tie covered with Dr. Seuss characters.
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November 5 Ana Watson and MGA Home Healthcare nurse Chelle carry Preston to a bean-bag chair. Preston has suffered continuous myoclonic clusters most of the day. He had a 30-second grand mal seizure early in the afternoon. Preston’s new normal is to go straight back into myoclonic clusters after a seizure. Dravet syndrome children usually have a variety of seizure types, which can change for a number of reasons.
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“We’ve pretty much tried everything else we can,” she reasoned.
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Milly walks out of the room, saying they should try later.
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In the five weeks since Preston left the hospital, Ana has restarted him on CBD — now shooting it efficiently into his feeding tube. Preston went the first two weeks without suffering a grand mal, but his blinky seizures remained.
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So optimistic is Ana that, as Preston’s 13th birthday approaches, she makes a bold decision: It’s time for her son to get his first real bicycle.
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