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The neurologists were baffled and kept hunting for new medicines.
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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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“Basically, we’ve tried it all,” Ana says. “That’s why we moved here for CBD. His doctors said we can’t go up in his meds anymore, and we were at a stopping point.”
How much does it cost?
Preston watches Dr. Maynard
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Sitting in the hospital meeting room, Greenwood said there was little more he could do for Preston with the medicines available. Without something new, Preston’s seizures would continue into adulthood — assuming he didn’t die before then.
After the movers left, Preston’s blinkies hit even worse. Drool dribbled off his chin and onto his T-shirt. Milly, who was watching him while Ana packed up the last things, sensed a bigger seizure building. She fanned Preston, hoping to calm the blinking.
The government safety sheets for each drug listed dozens of side effects. Tremors. Problems with walking or coordination. A potentially fatal rash. Panic attacks. Thoughts of suicide. Aggression.
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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.
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A cannabidiol hemp oil that Leafly says is used by "hundreds of thousands of patients" in the US for a variety of medical purposes, including to help relieve seizures, has been designated a Schedule 1 drug by the DEA, 7NEWS reports.
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