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Many of the families arriving in the state for medical marijuana — as well as those already living here — seek out the care of specialists at Children’s Hospital Colorado. About 100 kids who see doctors at the hospital have tried a CBD treatment.
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.
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An Oceanside family, desperate to save their dying son, has turned to medical marijuana. They say marijuana oil has helped cure the seizures that almost took his life. NBC 7’s Omari Fleming reports. (Published Wednesday, Jan. 8, 2014)
“The journey” is the title of this new section in the book.
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Some epilepsies respond well to generalized anti-seizure drugs. But the specific genetic mutation of each Dravet patient is different, meaning what works for some won’t work for others. Preston has at least four different kinds of seizure types, and they varied in severity and frequency as he grew older.
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“When these kids come, we hear a lot about it,” said Dr. Larry Wolk, head of the Colorado health department and a skeptic of the treatment’s success. “They get their CBD oil or their Charlotte’s Web. And if they respond, we continue to hear about it. If they don’t, they quickly disappear.”
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And so this was the logical next step. A leap into the unknown.
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In the five weeks since Preston left the hospital, Ana has restarted him on CBD — now shooting it efficiently into his feeding tube. Preston went the first two weeks without suffering a grand mal, but his blinky seizures remained.
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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.
The migration to Colorado by families of sick children seeking medical marijuana is fueled by hope, not science. Little is known about the treatment’s effects, and researchers suggest that some parents see progress because they’re desperate to see it.
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Two other states have also weighed in on the CBD oil issue:
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“You were being a big, mean shark. It’s OK.”
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