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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.
July 5 Preston wakes up for a moment during a series of myoclonic cluster seizures caused by Dravet syndrome. Preston can have hundreds of “blinky” or “butterfly” seizures per session. If the cycle is not broken, it can lead to grand mal seizures.
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Ana Watson and her family moved from North Carolina to Colorado with the dream that medical marijuana would help her son, Preston, and stop his relentless seizures. Their journey was harder than they expected. The answers were more elusive than the happy anecdotes seemed to promise. But they kept pressing forward because they said they had no other choice. Because Colorado was the only hope they had left.
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May 29 Clones of high-CBD strains of cannabis, including plants intended for use in making Charlotte’s Web, sit under lights at a growing facility in eastern Colorado.
A desperate hope and well-publicized stories about kids who have responded to the drug drive the families here, despite scant research on CBD’s overall efficacy. Scientists know so little about the treatment that it’s not even clear what CBD might do in the brain to impact seizures.
She also began giving him his tra***ional seizure medicines spread out over three doses a day instead of two, and Preston was also receiving intensive therapies for speech and life skills. Somewhere in that mix, a harmony emerged.
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They started with a drug called Depakote when Preston was 3 months old. But the seizures continued — as did the new treatments: Klonopin and Felbatol and Keppra. Zonegran and Topamax and Diamox and Banzel. Vitamin infusions. A special high-fat diet. An implanted electrical nerve stimulator. There were two other drugs not yet fully approved by the federal government that cost hundreds of dollars a month. There was another that has also been suggested for use in executions.
August 20 Ana Watson gets a firsthand view of the trimming and drying process that goes into making the CBD oil she is using to treat her son, Preston.
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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In a lab in Seattle, black mice twitch uncontrollably as they work their way through an electrified cage, furry little avatars of kids with Dravet syndrome...
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On Apr. 22, 2014, HB 843 passed the House Judiciary Committee by a 15-3 vote. The bill, sponsored by Republican Rep. Matt Gaetz, calls for "four regional orginizations around the state" to "grow, test and dispense" the oil. A patient registry would be created. Unlike other CBD legislation, HB 843 is not limited to seizure con***ions; patients with Parkinson's, Alzheimer's, PTSD and cancer would also qualify. It was passed by a 111-17 margin on May 1. The Senate version passed the bill by a 36-3 margin on May 2. Gov. Rick Scott signed th bill into law on June 16, making Florida the ninth state to legalize CBD oil.
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