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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.
Charlotte Dravet’s message to parents is simple: Don’t move.
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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.
“We have a special squirt-squirt we need to do, OK? You need to be a big boy,” she said.
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But, even now, the seizures remain a mystery. Some little eye-flutter seizures cause leaping spikes on the screen. Some seem to skip by without a change in the pattern. So chaotic is Preston’s brain that, looking later at the electroencephalogram, or EEG, doctors will have a hard time telling from the readings when he was awake and when he was asleep, when he was seizing and when he was still.
Related: Researchers bemoan roadblocks to medical marijuana research
For more info about states with pending marijuana legislation, go here.
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Milly gathered Preston up and sat him on her lap in a chair. He breathed heavily, wheezing in and huffing out. His eyes were shut.
Ana returned to the kitchen and shakily exhaled.
A desperate hope and well-publicized stories about kids who have responded to the drug drive the families here, despite scant research on CBD’s overall efficacy. Scientists know so little about the treatment that it’s not even clear what CBD might do in the brain to impact seizures.
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The result of that one-sided conversation, though, is that parents who give CBD to their children must turn to one another and their medical marijuana providers for help. Facebook has become a crowd-sourced doctor’s office. Colorado’s sometimes ragtag community of medical marijuana growers acts as a de facto human services agency.
Preston has been eyeing his sister’s bike
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What is CBD, and how is it taken?
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Not so much in words that anyone else would recognize. But, as the notes leak from the purple headphones covering his ears, Preston wah-wahs with the beat.
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