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“There is at least one basic science study that suggests CBD could be an effective anticonvulsant,” he said. “It has some promise, but at this point, unfortunately, it's not well studied enough to understand side effects and the long term benefits ratio of using this.”
“Silly mommy,” he says quietly.
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In advance of the move, Ana reduced the dose of one of the three main seizure medicines he takes — a drug called Onfi — because she had heard from other parents that CBD amplifies it. He was now taking about a third less than what Greenwood had prescribed, although she didn’t tell the doctor her plan.
“The journey” is the title of this new section in the book.
Seven months and 1,600 miles after their journey began, Ana has finally given Preston his first dose of marijuana.
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Preston’s breaths grew quieter.
October 7 Working to improve his hand-eye coordination, Preston concentrates on popping bubbles with one finger during occupational therapy at home with Kate Vovato, a therapist from MGA Home Healthcare.
On the next page is a picture of Preston with his head swaddled in gauze, a thick bundle of electrical wires poking out of the top of the wrapping like a bizarre ponytail.
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July 24 Preston gently touches his friend Hailey McGuire as she rests at his home. Hailey, Tami King’s daughter, also has Dravet syndrome. King had stopped at Watson’s home for the comfort of a friend after a doctor’s visit at which Hailey had her seventh grand mal seizure since 2 a.m. and is “still in seizure mode” as Tami calls it. There is a connection between Dravet mothers, but there also seems to be a deep understanding between Dravet kids.
Dravet isn’t like other epilepsies.
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The neurologists were baffled and kept hunting for new medicines.
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Her bookshelf at home charted the journey and spoke to her struggle. First came “What to Expect in the First Year.” Then “Keeping Faith.” Then “Delmar’s Drug Reference for Health Care Professionals.” Then “Three Weeks to Say Goodbye.”
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