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The hospital didn’t see any improvement in the before-and-after EEGs of four kids whose seizures appeared to lessen significantly. That may have been due to something called “electroclinical dissociation,” where the seizure still occurs but its outward indicators disappear. It also might be that parents can pick up on smaller improvements than an EEG can, said Dr. Kevin Chapman, a pediatric neurologist at Children’s who was a co-author on the study.
April 13 Ana Watson gets her first look at CBD oil at Jason Cranford’s grow operation in Boulder. Ana visited Colorado ahead of moving her family from North Carolina to change her residency and apply for a medical marijuana red card for Preston.
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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.
On June 1, 2015, Gov. Greg Abbott signed SB 339 into law, making Texas the 15th state to legalize CBD oil. Read more about it here.
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Watch Dr. Kelly Knupp explains what doctors discover by examining Preston’s electroencephalogram.
Sometimes, Greenwood and Ana would find a medicine that worked for Preston. The seizures would lessen and Preston would start to walk more steadily. But, just as quickly, Preston’s brain would rewire itself back to a broken state and the seizures would return.
There have been times Blake would have a seizure every half hour, and his mother, Stacy Lynch, would worry how he would get through the night.
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Preston’s baby book begins with pictures from a sonogram.
When he looked at the exodus of families heading to Colorado, Greenwood worried about the people who might prey on their desperation. But he also worried about the enthusiasm that might spring from their hope. He had warned Ana strongly against taking Preston off his other seizure drugs.
She had to wait another three days after picking up the oil for a lab report to come back to confirm its potency. When the day of the first dose finally arrived, in mid-July, Ana bounded into the kitchen of her new home to pull a bottle of the oil from the fridge.
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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.
July 16 Recovery room nurse Breanne Hagihara explains to Ana Watson that she will have to use extra care for the next six weeks as Preston’s incision for his gastrostomy tube heals and the permanent button can be put in at Children’s Hospital in Aurora.
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