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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.
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.
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In August, she learned online about CBD and obtained hemp oil from a friend of a friend. That oil happened to be high in THC and made Blake have more seizures. In search of a safe, consistent product, Lynch found HempMedPX. She put the CBD-rich hemp oil into a pill for Blake to ingest.
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There is, however, a further grey area to consider. In certain countries of the world – Canada, for instance, and several countries in the EU – cannabis plants which have a very low THC content are considered to be hemp. This percentage is usually either 0.2% or 0.3%. This means that for very carefully grown cannabis plants CBD can be obtained from cannabis flowers or “buds”.
October 7 Working to improve his hand-eye coordination, Preston concentrates on popping bubbles with one finger during occupational therapy at home with Kate Vovato, a therapist from MGA Home Healthcare.
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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An early and oft-reported survey of children on Charlotte’s Web found that 80 percent who tried it eliminated at least three of every four of their seizures. Now, even one of the specialists involved in that study questions whether it was overly optimistic. Subsequent studies have suggested the response rate might be closer to 30 percent or, perhaps, even lower.
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