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“It was fun, though, wasn’t it, Preston?”
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But, even now, the seizures remain a mystery. Some little eye-flutter seizures cause leaping spikes on the screen. Some seem to skip by without a change in the pattern. So chaotic is Preston’s brain that, looking later at the electroencephalogram, or EEG, doctors will have a hard time telling from the readings when he was awake and when he was asleep, when he was seizing and when he was still.
October 8 Jared Stanley loads the drying poles onto the holding racks during the Realm of Caring harvest. The 17-acre plot will be hand harvested and dried by draping the plants over poles in a huge warehouse.
October 7 Working to improve his hand-eye coordination, Preston concentrates on popping bubbles with one finger during occupational therapy at home with Kate Vovato, a therapist from MGA Home Healthcare.
“The vast majority of people, if they were going to respond, had a dramatic reduction of seizures,” Maa said. “That doesn’t represent the larger, global number of people who had exposure to it. We don’t know those true numbers yet.”
May 11 Ana Watson struggles for a good hold on her sleeping son after a family visit with her parents for Mother’s Day in North Carolina. Although Preston’s mental development was halted at the toddler stage, he is not much shorter than she and weighs nearly 70 pounds. Ana’s strength and determination drive her across the yard and into the house to get her boy to bed.
May 9 Preston’s at-home nurse Sheila Wall keeps watch after a sudden cloudburst while picking strawberries. Excitement and the quick drop in temperature brought on almost nonstop myoclonic seizures that Preston’s mother, Ana, fears may turn into a full grand mal seizure before they get home.
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Related: Every patient’s Dravet syndrome is a little different
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It wasn’t until Preston was 6 years old that doctors finally put a name to his condition: Dravet syndrome. And in some ways, that was worse than not knowing at all because it meant there was no cure to find.
No agency thoroughly regulates the treatment providers, beyond basic licensing. No rules govern the right formulation or dosage of the marijuana extract at the core of the treatment. No studies conclusively document the side effects.
Preston concentrates on popping bubbles
Watch Haleigh Cox was diagnosed with Lennox-Gastaut Syndrome as a baby. She is the namesake of “The Haleigh’s Hope Act,” a bill filed in Georgia to legalize cannabis oil high in CBD. The oil is used to control her seizures.
But the study also calls into question parents’ ability to be objective. The doctors found that parents who had moved to Colorado for medical marijuana were much more likely to report that it had helped their children significantly than those who were already living in Colorado — 52 percent compared with 17 percent. In other words, the greater the leap of hope it took to try CBD, the more likely a parent was to see progress.
“But you have to be careful that you’re not making things in your brain,” she said. “We’re all watching him and his behavior.”
Ana Watson blocks the door to keep Preston inside
Preston hides from his mom
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