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“The journey” is the title of this new section in the book.
It wasn’t until Preston was 6 years old that doctors finally put a name to his con***ion: Dravet syndrome. And in some ways, that was worse than not knowing at all because it meant there was no cure to find.
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Soon, Jason hands Ana new bottles of cannabis oil. This time, he’s giving her one bottle of high-CBD oil and another bottle containing high-THC.
A voice tiptoed back to her with the peanut-butter-mouth slur of a child’s early words: “Wuh moh minuh.”
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May 12 Preston spits out his seizure medications, which were mixed with sweet tea. He took the first few squirts easily, but as more of the undissolved pills filled the syringe, the taste and texture became much worse. Preston’s meds have been masked in everything imaginable — sweets, ice cream, whipped cream, ranch dressing — which he eats on almost everything. But all attempts are less and less effective.
Instead, Preston turns his head side to side to avoid the dropper. Squirming on the couch next to his mother, he’s nearly as tall as she is. But hundreds of seizures a day have restrained his development to that of a 2-year-old. He is 12 years old, yet in many ways he’s a 70-pound toddler.
August 8 Milly supports Preston’s head, trying to calm Preston as he comes out of a grand mal seizure. Preston was playing with a water slide in the back yard when he fell and began to seize. A doctor’s appointment the next day reveals a broken bone in his foot.
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CBD — or cannabidiol, as it’s known scientifically — is one of dozens of compounds in marijuana called cannabinoids. The compounds work by plugging into receptors on nerve cells, although much of their activity is still unclear. Tetrahydrocannabinol, or THC, is the most famous cannabinoid found in marijuana. But, unlike THC, CBD does not get users stoned.
Ana tries to bribe him with his favorite YouTube videos — “I’ll press play if you take a bite.” He still refuses.
Including the new Children’s study, the nine studies or surveys looking at whether CBD controls seizures in humans form a scientific crazy quilt.
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But no doctor at Children’s recommends using cannabis or gives more than cautious advice about it.
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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Watch Dr. Kelly Knupp explains what doctors discover by examining Preston’s electroencephalogram.
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After he harvests his marijuana plants, he hangs them over the arms of a weight bench in his front room, ready to be trimmed. He extracts the oil in a lab he assembled in his garage. When families arrive, his German shepherd is there to greet them.
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