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“You think you’d get used to seeing him like this,” she said. “But it scares me to death every time.”
July 11 Sydney Watson, 8, tries to get older brother, Preston, to drink some sweet tea. Sydney was Preston’s little nurse when they were younger, helping her mother care for him. Preston hasn’t been eating very well or taking medications without a fight lately, and Ana asked Sydney to help.
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One of those extreme cases is out of Orange County. Blake Zika, 22, has suffered from frequent seizures since he was four years old. His illness has left him developmentally challenged.
Preston’s journey
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Expand this story
Most important, no one knows how often it works.
Ana tries to bribe him with his favorite YouTube videos — “I’ll press play if you take a bite.” He still refuses.
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For instance, CBD providers commonly tell newly arrived parents that they should reduce the level of an anti-seizure drug called Onfi before starting CBD because the two could have a dangerous interaction. Parents often reduce the medicine without consulting with their doctors. Doctors at Children’s, though, say they haven’t seen conclusive evidence that CBD has an impact on Onfi levels. Meager research makes it impossible to know who is right.
On Apr. 30, 2015, Gov. Mary Fallon signed legislation making Oklahoma the 14th state to legalize CBD oil. “This bill will help get sick children potentially life-changing medicine,” Fallin started. “By crafting the legislation in a way that allows for tightly controlled medical studies, we can ensure we are researching possible treatments in a responsible and scientific way. It is not marijuana, and it is not anything that can make you high. This law has been narrowly crafted *****pport highly supervised medical trials for children with debilitating seizures."
Graphic: Mapping Preston’s seizures
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Ana grabs his arm, but he pushes her back. She tackles him and squirts the oil into his mouth, but he coughs it back up. She reaches for her cellphone.
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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He can have hundreds of blinkies a day. And, though they usually pass gently, each one is like an eraser across his brain’s chalkboard. Over and over, new development is wiped clean by the seizures. So, over and over, he learns the same things.
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Ana Watson holds her son, Preston
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