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Even as families flock to the state, few doctors here condone the use of marijuana to treat seizures. And that means the very people on whom families depend for medical advice are often silent when it comes to critical questions about the new treatment.
Preston gently touches his friend Hailey McGuire
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A voice tiptoed back to her with the peanut-butter-mouth slur of a child’s early words: “Wuh moh minuh.”
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Related: Epilepsy drug development is a sparse field
August 8 Milly supports Preston’s head, trying to calm Preston as he comes out of a grand mal seizure. Preston was playing with a water slide in the back yard when he fell and began to seize. A doctor’s appointment the next day reveals a broken bone in his foot.
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July 29 Preston meets Dr. Alan Shackelford at his office in Denver. He and his mother, Ana, are visiting the doctor for help with Preston’s dosing. Shackelford evaluated Preston’s physical con***ion, then went over his medical history with Ana and her mother to figure out a starting point to use the CBD oil.
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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.
May 11 Ana Watson struggles for a good hold on her sleeping son after a family visit with her parents for Mother’s Day in North Carolina. Although Preston’s mental development was halted at the toddler stage, he is not much shorter than she and weighs nearly 70 pounds. Ana’s strength and determination drive her across the yard and into the house to get her boy to bed.
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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.”
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“Colorado represents hope at this point,” she said. “This is the state of hope.”
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