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When he looked at the exodus of families heading to Colorado, Greenwood worried about the people who might prey on their desperation. But he also worried about the enthusiasm that might spring from their hope. He had warned Ana strongly against taking Preston off his other seizure drugs.
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Leaving Children’s after the first visit, Ana still has questions about CBD. But doctors there have set up several new appointments to address other aspects of Preston’s care. He will soon have a feeding tube inserted into his stomach, allowing Ana to give him food and medicine consistently. She’ll take him to get fitted for a new helmet to protect him in falls.
Most important, no one knows how often it works.
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Myoclonic seizures Brief seizures characterized by little muscle jerks. Preston’s eyelid flutters are a myoclonic seizure.
October 8 Penn Mattison and Shawn McCafferty load tall holding racks with cannabis plants to be hauled to the drying warehouse during the Realm of Caring hemp harvest in eastern Colorado.
May 8 The dregs of his afternoon seizure medications are still on his lips as Preston rests on his porch after a long day of school interrupted by numerous myoclonic seizures.
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July 9 Preston, his mother, Ana Watson, sister Sydney Watson and grower Jason Cranford take a first look at the plants, named “Haleigh’s Hope,” that will provide the oil for an attempt to control Preston’s seizures. “This is the plant that is going to help Preston,” Ana said.
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?
“In a way,” he told Ana, “it’s an uncontrolled experiment. Which I don’t necessarily like. But we are pressed into this circumstance.”
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Doctors at Children’s Hospital Colorado recommend that kids with epilepsy get a baseline EEG before beginning CBD treatments. Doctors then ask patients to follow up with another EEG three or four months later to gauge if any changes have occurred. EEGs aren’t sensitive enough to pick up on all improvements — such as if a child begins using new words. But doctors believe it is a good way to measure big changes. “If your EEG is abnormal, it’s probably going to be pretty hard to be a good student,” said Dr. Kevin Chapman, a neurologist at Children’s.
Preston’s journey
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Like all of the parents coming to Colorado in search of a cure, Ana Watson hopes hers will become a success story. Staying in North Carolina offered no hope for Preston. Still, she can’t predict what lies ahead.
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It wasn’t until his second year of life that Ana began to notice the toll the seizures were taking. When other kids Preston’s age were learning more words and stringing them into sentences, he didn’t. When walking and grasping led to running and catching for other children, it didn’t for Preston. It was as though his life ground to a stop, even as time ticked on.
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