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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.”
“I thought it went really well,” she says.
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But Ana’s jaw clenches.
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October 8 Penn Mattison and Shawn McCafferty load tall holding racks with cannabis plants to be hauled to the drying warehouse during the Realm of Caring hemp harvest in eastern Colorado.
July 23 An absent seizure looks and feels just like it sounds: Preston stopped interacting, staring into nothing, drool leaking from his mouth, his hands unmoving. It was a startling change from the blinking and jaw-working during his “normal” myoclonic clusters. Dravet syndrome children experience many types of seizures. The seizures can change, and some children will have a combination of seizure types, all during one episode.
Her bookshelf at home charted the journey and spoke to her struggle. First came “What to Expect in the First Year.” Then “Keeping Faith.” Then “Delmar’s Drug Reference for Health Care Professionals.” Then “Three Weeks to Say Goodbye.”
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No agency thoroughly regulates the treatment providers, beyond basic licensing. No rules govern the right formulation or dosage of the marijuana extract at the core of the treatment. No studies conclusively document the side effects.
“We can’t force him to take it!” Milly shouts.
“The point of this is to get a baseline,” Knupp had told Ana, “so that after you’re on CBD, you can have a baseline to look at.”
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July 25 Preston isn’t feeling well and took to the couch, but sister Sydney decided he needed a little cheering up by playing swoosh with his blanket.
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