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September 15 Ana Watson gives Preston his CBD oil in the recovery room after getting his permanent feeding button in place at Children’s Hospital in Aurora.
As the namesake for the severe form of epilepsy that afflicts many children arriving in Colorado for medical marijuana treatment, Dravet said parents often ask her about whether moving to Colorado is worth it. She tells them to wait...
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Expand this story
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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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.
“We don’t make recommendations about the marijuana therapy because we don’t have the information to do that,” said Dr. Amy Brooks-Kayal, the head of pediatric neurology at Children’s. “We feel very strongly that we need to act on good medical and scientific evidence, and that doesn’t exist.”
Dr. Joshua Hartsel tests the products of HempMedPX and says they contain less than 1 percent THC and up to 90 percent CBD. He says the products are tested three to five times and at least once at a third-party lab.
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The only hope left
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.
“It’s OK,” she whispers. “It’s OK, Boo-Boo.”
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“Tried it,” Ana says.
July 7 Preston, curious about everything, watches his new pediatrician, Dr. Edward Maynard, adding notes from the 12-year-old’s first visit and examination at Iron Horse Pediatrics in Colorado Springs. Doctors, hospitals, nurses and tests have been a part of Preston’s life since he was diagnosed with Dravet syndrome as a baby.
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October 8 Andrew Tobey waits for Cody Morehead to catch up as they hang the drying poles during the Realm of Caring hemp harvest in eastern Colorado.
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July 3 Preston tries his hardest to get this box into the family’s new home. Finally, he is able to help unload the trailer, which has held his complete attention as it followed his family across the country on the trip to Colorado.
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