The Neurologist said we had every right to question his advice about seizure medications. He leaned against a paper-covered table, and my husband and I sat in chairs against the wall. Fiona, who was sick with a cold that day, sat in her stroller. “Do you have to follow my recommendations? No,” he said. “You don’t. That’s your right as a parent.”
I was relieved. I’d been hesitant about a particular drug he recommended for Fiona. I wanted to check with the Wolf-Hirschhorn syndrome community and see about other people’s experiences with the drug.
“Let me give you an analogy,” the Neurologist said. Then he told us this story:
He once had a patient who was “profoundly disabled,” he said. She was in a wheelchair. She needed a feeding tube. (There is a way to list these details as facts, and there is a way to list these details as…
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