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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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July 13 Tami King and Ana Watson recheck dosing measurements for the CBD oil that they hope will help control Preston’s seizures.
May 8 The dregs of his afternoon seizure medications are still on his lips as Preston rests on his porch after a long day of school interrupted by numerous myoclonic seizures.
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May 29 High-CBD strains of cannabis grow under natural light. The Stanley brothers have specialized in breeding cannabis, including Charlotte’s Web, that is intended as medicine for Colorado Realm of Caring patients.
Four months after they arrived in Colorado — one of hundreds of desperate families moving here for medical marijuana for their children — the seizures that restrain Preston at the developmental level of a 2-year-old have calmed. A tumultuous beginning has given way to a month-long stretch without a grand mal seizure.
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Hope for Preston
November 5 Ana Watson and MGA Home Healthcare nurse Chelle carry Preston to a bean-bag chair. Preston has suffered continuous myoclonic clusters most of the day. He had a 30-second grand mal seizure early in the afternoon. Preston’s new normal is to go straight back into myoclonic clusters after a seizure. Dravet syndrome children usually have a variety of seizure types, which can change for a number of reasons.
June 18 A few days before moving to Colorado in search of new treatments for Preston, Ana takes the family to the shore in North Carolina for a short vacation.
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By not engaging more with providers, doctors often lack an understanding of the types of marijuana products their patients are using and are unaware of the sometimes contradictory advice their patients receive.
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October 8 The Realm of Caring drying warehouse is slowly filled with the plants from the 17-acre grow plot. This strain of marijuana has less than 0.3 percent THC and qualifies as hemp under Colorado’s marijuana laws.
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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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