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Preston helps “Paw Paw” Don Raynor
August 6 Preston cries as Milly and his nurse, Chelle Bennett, try to remove his wet clothes and warm him with blankets. The pain from a fall while he was playing with a water slide appears to have caused a grand mal seizure.
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A handful of organizations have sprouted in the past couple of years to offer support to parents moving to Colorado and those already here. Communities of families have grown up to provide advice and encouragement and a happy source of friendship.
[DGO]Toddler Seizures Treated with Medical Marijuana
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For instance, CBD providers commonly tell newly arrived parents that they should reduce the level of an anti-seizure drug called Onfi before starting CBD because the two could have a dangerous interaction. Parents often reduce the medicine without consulting with their doctors. Doctors at Children’s, though, say they haven’t seen conclusive evidence that CBD has an impact on Onfi levels. Meager research makes it impossible to know who is right.
Ana Watson measures Preston’s first dose
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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But the results were ultimately even less conclusive.
July 24 Preston gently touches his friend Hailey McGuire as she rests at his home. Hailey, Tami King’s daughter, also has Dravet syndrome. King had stopped at Watson’s home for the comfort of a friend after a doctor’s visit at which Hailey had her seventh grand mal seizure since 2 a.m. and is “still in seizure mode” as Tami calls it. There is a connection between Dravet mothers, but there also seems to be a deep understanding between Dravet kids.
On Apr. 7, 2015, the Idaho House approved a CBD oil bill by a close 39-30 vote. Named for 11-year-old epilepsy patient Alexis Carey, the legislation would allow parents to possess up to 32 fluid ounces of liquid cannabidiol (max 15% CBD and .03% THC) to administer to chilldren who suffer from seizure disorders. On Apr. 16, Gov. Butch Otter vetoed the bill. However, he says he'll issue an executive order requiring the state's Department of Health and Welfare to study the effects of CBD oil pn epilepsy; this may lead to accees to the oil for children. But Idaho at this point sode not qualify as a CBD-legal state.
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“Yes,” Ana sighs, “we’ve tried everything.”
July 16 “Oma,” Preston’s grandmother Milly, watches as nurses prepare him for surgery at Children’s Hospital in Aurora. For weeks he has not been eating well or getting his full amount of seizure medications. Preston went in for an appointment to meet his neurologist that turned into an operation for a gastrostomy tube and a 24-hour EEG. His mother, Ana Watson, had to stop giving him the CBD oil so they could get a good baseline EEG.
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Many of the families arriving in the state for medical marijuana — as well as those already living here — seek out the care of specialists at Children’s Hospital Colorado. About 100 kids who see doctors at the hospital have tried a CBD treatment.
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Preston starts singing.
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