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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.
“Oma” — Preston’s grandmother Milly Raynor
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It took 12 days after arriving in Colorado for Ana to get the marijuana oil for Preston’s first dose. Twelve days of waiting. Twelve days of seizing. Twelve days of wondering what would happen.
September 3 Ana is trying a new way of giving Preston his oil. She is giving him straight THC by mouth separately from the CBD oil she gives him in his feeding tube. He hated it. She squirted it in and he started spitting and sputtering as soon as he tasted it. She ended up mixing it with formula and using his feeding tube. By using the oil separately she can figure his dosing ratios for tighter control.
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Now she can make any ratio she wants, Jason says. It’s the third formulation change since Preston started the oil six weeks ago.
She’s learning that when it comes to Preston’s treatment, tra***ional medicine and marijuana have at least this much in common: There are still far more questions than answers.
His hunting spared no one. He drenched Milly. Sydney escaped back inside, water dripping down her hair. And Preston laughed with such big gulps of air that it sounded as if his own joy might strangle him. Until, suddenly, his laughter stopped.
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She also began giving him his tra***ional seizure medicines spread out over three doses a day instead of two, and Preston was also receiving intensive therapies for speech and life skills. Somewhere in that mix, a harmony emerged.
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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.
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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October 26 Preston has been eyeing his sister’s bike for a long time, taking every chance to sit on it when he could. On his 13th birthday, he finally has one of his own, with big training wheels.
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So Ana visited her CBD provider, who gave her oil at a 10:1 ratio of CBD to THC, and the next day she watched as her son ate better than he had in months: a plate of fried okra, a plate of potato chips smothered in barbecue sauce, a stick of string cheese, a Frosty and, most surprising of all, tuna salad with crackers.
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