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“We worry about all the stresses that families had to go through to start the treatment,” Chapman said. “That desire for it to be effective may cloud their recognition of seizures.”
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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Preston isn’t feeling well
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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A family photograph of Preston as a baby.
But no doctor at Children’s recommends using cannabis or gives more than cautious advice about it.
“Keppra often causes behavioral issues,” the doctor responds.
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Overall cost varies based on the amount a child takes, which itself varies based on how big the child is. Different providers also charge different prices. For kids using Charlotte’s Web, a typical family spends about $300 a month for CBD oil.
It was subtle. But Ana swore there was a change in her son. He was more talkative, more stable on his feet.
July 13 Tami King and Ana Watson recheck dosing measurements for the CBD oil that they hope will help control Preston’s seizures.
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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.”
Ana married, and Sydney was born. She and her husband fell into debt, in part because of medical bills before Preston qualified for Medicaid. Their marriage collapsed under the stress, and Ana moved back in with her parents. She tried working full time, then cut back to part time.
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Ana and Preston head off to school
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