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But for now, she walks back to her minivan and returns home to try again.
“No. Not yet.”
The doctor looks at her list. She looks sympathetically at Ana.
That’s why Ana moved her family across the country to Colorado, where Preston could try a treatment that’s not on the doctor’s list. Three days before the doctor’s appointment in mid-July, Ana gave Preston his first dose of an unregulated medical marijuana extract that is high in a compound called CBD. Hundreds of families like Ana’s have moved to Colorado for the treatment, hoping it will calm their children’s 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.
Today, there are 427 children under 18 on the state’s medical marijuana registry, including 13 under 2 years old. That total number is up from just 60 in August 2013, when the documentary aired. More arrive every month.
“We worry about all the stresses that families had to go through to start the treatment,” Chapman said. “That desire for it to be effective may cloud their recognition of seizures.”
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.
The Legal Status of CBD
Leaving Children’s after the first visit, Ana still has questions about CBD. But doctors there have set up several new appointments to address other aspects of Preston’s care. He will soon have a feeding tube inserted into his stomach, allowing Ana to give him food and medicine consistently. She’ll take him to get fitted for a new helmet to protect him in falls.
Kids using CBD don’t smoke it. Instead, it comes infused into a cooking oil, like olive or safflower oil. Typically, parents are told to squirt the oil under their children’s tongues. But some families mix it in food or give it through a feeding tube.
Our current level of understanding of CBD has only been reached in the last few years, following the discovery of a system of receptors within the human body termed the Endocannabinoid System. This system has been shown to play a critical role in regulating our physiology, mood and immune system. Cannabinoid compounds are able to bind to these receptors which are placed throughout our brain as well as in every major organ in our body.
New York
This time, she walks to him without a smile. She leads him into the bathroom and pulls down his diaper. She muscles him close.
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.
While Preston played later in the backyard August sunshine, his eyes seemed to roar.
Preston meets Dr. Alan Shackelford
“An uncontrolled experiment”
A handful of organizations have sprouted in the past couple of years to offer support to parents moving to Colorado and those already here. Communities of families have grown up to provide advice and encouragement and a happy source of friendship.
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