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October 8 Horticulturist Penn Mattison of Tennessee heads to the holding racks with cannabis plants during the Realm of Caring hemp harvest. Penn and his family moved to Colorado in January, 2014, looking to help his daughter with undiagnosed intractable epilepsy. “Everything just worked out,” he said about working for the Realm.
An early and oft-reported survey of children on Charlotte’s Web found that 80 percent who tried it eliminated at least three of every four of their seizures. Now, even one of the specialists involved in that study questions whether it was overly optimistic. Subsequent studies have suggested the response rate might be closer to 30 percent or, perhaps, even lower.
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Even as families flock to the state, few doctors here condone the use of marijuana to treat seizures. And that means the very people on whom families depend for medical advice are often silent when it comes to critical questions about the new treatment.
Preston has been eyeing his sister’s bike
It took 12 days after arriving in Colorado for Ana to get the marijuana oil for Preston’s first dose. Twelve days of waiting. Twelve days of seizing. Twelve days of wondering what would happen.
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Preston gives his mother a suspicious look
Ana Watson has decided to try adding THC
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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A handful of organizations have sprouted in the past couple of years to offer support to parents moving to Colorado and those already here. Communities of families have grown up to provide advice and encouragement and a happy source of friendship.
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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The documentary about Charlotte Figi aired the next summer, and by late 2013 — as Preston approached his 12th birthday stuck in the same developmental rut he had been in for his previous nine — the online whispers of a marijuana miracle in Colorado had turned into a roar. One by one, other Dravet children’s parents — with whom Ana had become close friends online but never met in person — began arriving in Colorado, posting hopeful updates on their children’s progress. The hope tugged at her.
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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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