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It was subtle. But Ana swore there was a change in her son. He was more talkative, more stable on his feet.
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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.
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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.
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But, when parents such as Ana Watson arrive with little more than a desperately sick child and a hope to make it better, they walk into uncharted territory. They become part of a medical experiment that plays out in living rooms, not doctors’ offices.
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“Time to get up, Boo-Boo,” Ana said to him. “Come on.”
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Dravet isn’t like other epilepsies.
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It was subtle. But Ana swore there was a change in her son. He was more talkative, more stable on his feet.
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