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At the end of their first visit, Dr. Kelly Knupp, Preston’s new neurologist at Children’s, suggested the EEG so that the hospital could have some starting record of Preston’s brain activity. The timing worked; Preston was already in the hospital, after the feeding tube surgery the day before.
“We’ve pretty much tried everything else we can,” she reasoned.
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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.
While doctors at Children’s don’t exactly want their patients on CBD, they are eager to find out what it’s doing. Knupp told Ana that doctors at the hospital now recommend all patients have both an EEG and a bloodwork exam prior to starting CBD. They would like to run follow-up tests every three or four months.
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They look at different forms of epilepsy, different kinds of seizures and different measurements of success. At least five different types of CBD-rich marijuana therapies are represented in the studies.
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July 3 Preston gives his mother a suspicious look as she tries to offer him ice cream with an M&M on top. He knows she is trying to give him his afternoon medications; after years of this working for their family, Preston has stopped falling for the ruse and fights it every time.
Ana Watson measures Preston’s first dose
On June 27, 2014 the state legislature passed CBD-oil bills (there was only on nay vote). The legislation calls for a trial study to be conducted by the state's top four universities - UNC, Duke, Wake Forest and East Carolina. Th primarry focus is making making the oil avaialble to youngsters who suffer from seizures. Neurologists are responsble for providing the medicine. Gov. Pat McCrory signed the bill into law into law on July 3, making North Carolina the 10th state to legalize CBD oil.
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Slowly working his way through the potatoes, Preston’s hands stopped and his eyelids flickered for a few seconds before popping back open. The first seizure of the day had come and gone.
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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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