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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.
“Yes,” Ana sighs, “we’ve tried everything.”
Ana returned to the kitchen and shakily exhaled.
“The journey” is the title of this new section in the book.
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.
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.
Step 2: Two separate doctors must recommend that the child use marijuana. Doctors can make the recommendation only if they diagnose the child with one of eight conditions: cancer, HIV, glaucoma, cachexia, persistent muscle spasms, seizures, severe nausea or severe pain.
Let’s use hemp to make paper and textiles. Let’s use cannabis to make our CBD medicine.
She also began giving him his traditional 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.
Ana doesn’t remember what Preston’s first word was. What she does remember is that first word arrived right on time. As did his first crawls. And his first steps.
There have been times Blake would have a seizure every half hour, and his mother, Stacy Lynch, would worry how he would get through the night.
A nurse stops in for a quick check
“We have a special squirt-squirt we need to do, OK?” Ana tells Preston, adopting a smile as she walks toward him. “You need to be a big boy.”
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.
Hope for Preston
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.
Preston resists his mother’s requests
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.
His cries fade to whimpers. His eyelids twitch with another seizure. Ana sits on the toilet, holding him on her lap as he quivers in her arms.
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