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Preston’s grandmother, Milly, thought he had the munchies.
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“Beautiful,” another wrote. “So beautiful.”
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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July 12 Preston watches as Ana and her mother, Milly Raynor, argue over how to administer the CBD oil after Preston spit out their first attempt at giving it to him orally. Milly will not let the argument end, and in the tension of the moment Ana asks, “Why did we even come down here? He needs to take it.”
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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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But now Maa wonders whether families who tried CBD with little success quit using the treatment before they could be included in the study. The Realm of Caring says only one patient had stopped using CBD at the time the survey was conducted. Maa is working on a genetic study trying to determine why some kids respond to CBD and some don’t.
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Her new friends in Colorado — parents who, like her, came to the state seeking hope through cannabis — cheered on her social media updates.
The neurologists were baffled and kept hunting for new medicines.
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Ana is trying a new way of giving Preston his oil
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Preston pulls back toward the lunchroom
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