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Slowly working his way through the potatoes, Preston’s hands stopped and his eyelids flickered for a few seconds before popping back open. The first seizure of the day had come and gone.
Some physicians are now stepping forward to work with providers on clinical trials for CBD, and doctors at Children’s have begun recording more specific details of the CBD products their patients are using — who is providing the medical marijuana and how much the child is taking, for instance. But the broader dynamic still hinders the study of CBD’s effectiveness. And that only increases the uncertainty that hangs over families such as Ana’s in their Colorado exile.
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July 5 Preston wakes up for a moment during a series of myoclonic cluster seizures caused by Dravet syndrome. Preston can have hundreds of “blinky” or “butterfly” seizures per session. If the cycle is not broken, it can lead to grand mal seizures.
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There is, however, a further grey area to consider. In certain countries of the world – Canada, for instance, and several countries in the EU – cannabis plants which have a very low THC content are considered to be hemp. This percentage is usually either 0.2% or 0.3%. This means that for very carefully grown cannabis plants CBD can be obtained from cannabis flowers or “buds”.
Step 3: Parents must fill out an application and get it notarized. The application includes a parental consent form that both parents must sign. Parents must submit a copy of the child’s birth certificate, and they must list themselves as their child’s medical marijuana caregiver.
April 15 Ana Watson keeps a sharp eye as Preston goes into a grand mal seizure on the frontage road near Castle Rock on Interstate 25 on their way from Colorado Springs to see Jason Cranford at his Rifle Mountain Dispensary grow in Boulder. Ana is visiting from North Carolina to change her residency and apply for a medical marijuana red card for Preson.
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July 13 Tami King and Ana Watson recheck dosing measurements for the CBD oil that they hope will help control Preston’s seizures.
May 8 The dregs of his afternoon seizure medications are still on his lips as Preston rests on his porch after a long day of school interrupted by numerous myoclonic seizures.
Now she can make any ratio she wants, Jason says. It’s the third formulation change since Preston started the oil six weeks ago.
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“Colorado represents hope at this point,” she said. “This is the state of hope.”
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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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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