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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.
At least two children and one woman across the country have died while their families prepared to move to Colorado for medical marijuana. One child who made it here died when the treatment didn’t help her con***ion enough. Her mother moved back home alone.
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So Ana kept searching for a cure.
Public support for the legalization of marijuana dipped during the 1980s, but has grown dramatically in the past 45 years.
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Greenwood had been cautiously supportive of Ana’s move, in part because it preserved some of his input into Preston’s care. Tell a family no when they’re on the trail of hope, and they’ll leave you behind. For all of the parents asking him about moving to Colorado — Ana was not the first — Greenwood had told them the same thing: There’s no hard evidence it works, but there’s no hard evidence it’s causing harm, either.
Expand this story
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.
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But now Maa wonders whether families who tried CBD with little success quit using the treatment before they could be included in the study. The Realm of Caring says only one patient had stopped using CBD at the time the survey was conducted. Maa is working on a genetic study trying to determine why some kids respond to CBD and some don’t.
On Apr. 22, 2014, HB 843 passed the House Judiciary Committee by a 15-3 vote. The bill, sponsored by Republican Rep. Matt Gaetz, calls for "four regional orginizations around the state" to "grow, test and dispense" the oil. A patient registry would be created. Unlike other CBD legislation, HB 843 is not limited to seizure con***ions; patients with Parkinson's, Alzheimer's, PTSD and cancer would also qualify. It was passed by a 111-17 margin on May 1. The Senate version passed the bill by a 36-3 margin on May 2. Gov. Rick Scott signed th bill into law on June 16, making Florida the ninth state to legalize CBD oil.
An hour-and-a-half later, as Preston quivered on her lap in the bathroom following the first dose, she realized this journey would be tougher than she hoped.
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But, when parents such as Ana Watson arrive with little more than a desperately sick child and a hope to make it better, they walk into uncharted territory. They become part of a medical experiment that plays out in living rooms, not doctors’ offices.
Related: Epilepsy drug development is a sparse field
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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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May 29 Clones of high-CBD strains of cannabis, including plants intended for use in making Charlotte’s Web, sit under lights at a growing facility in eastern Colorado.
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