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A bundle of 21 multicolored electrical wires poke from the top of a wrapping on Preston’s head, running off the bed and to the computer. Every gesture, every word, every eye blink shows up as activity on the screen, where blue, maroon and green lines measure Preston’s brain activity. It is one answer to the question that has vexed Ana for the past 12 years: What is happening inside her son’s head?
“It’s OK,” she whispers. “It’s OK, Boo-Boo.”
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Overall cost varies based on the amount a child takes, which itself varies based on how big the child is. Different providers also charge different prices. For kids using Charlotte’s Web, a typical family spends about $300 a month for CBD oil.
Preston isn’t feeling well
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July 3 Preston gives his mother a suspicious look as she tries to offer him ice cream with an M&M on top. He knows she is trying to give him his afternoon medications; after years of this working for their family, Preston has stopped falling for the ruse and fights it every time.
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Preston spits out his seizure medications
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While doctors at Children’s don’t exactly want their patients on CBD, they are eager to find out what it’s doing. Knupp told Ana that doctors at the hospital now recommend all patients have both an EEG and a bloodwork exam prior to starting CBD. They would like to run follow-up tests every three or four months.
On June 3, 2014, Gov. Andrew Cuomo announced that the state has entered into an agreement with GW Pharmaceuticals to investigate the efficacy of cannabidiol use by children suffering from the seizure disorders Dravet's syndrome and Lennox-Gastuat syndrome. The clinical trials will take place at hospitals, universities and medical colleges. GW is already working with NYU's Langone Medical Center on a trial involving 60 children and their CBD product, Epidiolex. New York passed a broader medical marijuana bill on June 20.
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NBC 7's Candice Nguyen talks with a San Diego neurologist who says in extreme cases, it may be reasonable for patients to consider trying CBD after consulting their doctor. (Published Tuesday, Feb. 11, 2014)
Preston starts singing.
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However it is not just a matter of bureaucratic labeling. It is a question of life and death. Due to cannabis being scheduled this way it is almost impossible for medical research into cannabinoids to take place. The DEA has the power to prevent scientists from studying these compounds – and they have done just that. The DEA has systematically and ruthlessly prevented scientists from working with cannabinoids, and the consequences have been tragic.
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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.
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