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Ana’s mom, Milly, stirs more medicine into ice cream and brings it over. But Preston won’t eat.
“It’s OK,” Milly whispered again. “It’s OK.”
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She checked her phone for online answers. Finally, eager to move on, she set the phone down.
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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It was about a month before the move away from their little brick house in Greensboro, N.C., and, sometime in the night before, Preston left his own bed and sleepwalked into Ana’s. Sydney was already there. When Ana woke before dawn, she was nestled between children.
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.
Since then, she says he has had far fewer seizures and is able to sleep through the night.
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Related: Every patient’s Dravet syndrome is a little different
But Ana’s jaw clenches.
Some physicians are now stepping forward to work with providers on clinical trials for CBD, and doctors at Children’s have begun recording more specific details of the CBD products their patients are using — who is providing the medical marijuana and how much the child is taking, for instance. But the broader dynamic still hinders the study of CBD’s effectiveness. And that only increases the uncertainty that hangs over families such as Ana’s in their Colorado exile.
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Step 1: At least one parent and the child must be Colorado residents. Residency can be established quickly.
And so this was the logical next step. A leap into the unknown.
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There are the grand mals, known clinically as tonic-clonic seizures, that are full of violent convulsing that can last minutes. Preston falls into one about once a week. But much more common are the little eye flutters. In medical terms, they are called myoclonic seizures. Ana calls them “blinkies.” They look as though Preston is on the verge of sneezing.
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Some epilepsies respond well to generalized anti-seizure drugs. But the specific genetic mutation of each Dravet patient is different, meaning what works for some won’t work for others. Preston has at least four different kinds of seizure types, and they varied in severity and frequency as he grew older.
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