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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.
Preston has been eyeing his sister’s bike
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In advance of the move, Ana reduced the dose of one of the three main seizure medicines he takes — a drug called Onfi — because she had heard from other parents that CBD amplifies it. He was now taking about a third less than what Greenwood had prescribed, although she didn’t tell the doctor her plan.
October 16 Preston rides and controls a scooter for the first time by himself in the open space in front of his home.
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But the results were ultimately even less conclusive.
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.
“We pushed that too far, didn’t we?”
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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.
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On Apr. 16, 2014, Gov. Scott Walker signed AB 726 into law, making Wisconsin the fourth state to legalize CBD oil. It's unclear where and by whom the oil is going to be produced.
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Walking toward him, she had no idea of the frustration ahead, and no inkling of the discomfort she would inflict on them both in her effort to bring relief. All she knew as she looked toward her seizing son was that she held in her hands the latest, best chance to move his life forward.
As the namesake for the severe form of epilepsy that afflicts many children arriving in Colorado for medical marijuana treatment, Dravet said parents often ask her about whether moving to Colorado is worth it. She tells them to wait...
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The hospital didn’t see any improvement in the before-and-after EEGs of four kids whose seizures appeared to lessen significantly. That may have been due to something called “electroclinical dissociation,” where the seizure still occurs but its outward indicators disappear. It also might be that parents can pick up on smaller improvements than an EEG can, said Dr. Kevin Chapman, a pediatric neurologist at Children’s who was a co-author on the study.
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Preston starts singing.
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