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Millie (of Nashville, Tennessee) sees a neurologist at the Neurometabolic Clinic at the Cincinnati Children's Hospital every three months. Between visits to Cincinnati, Millie frequents the emergency room at Vanderbilt. But the cause of her seizures is still unknown.
She's endured intubations, blood transfusions, spinal taps, MRIs, CAT scans, genetic testing and stints in the pediatric intensive care unit, one due to kidney shutdown from an anti-seizure ketogenic diet. She's been on as many as 11 medications at one time and relies upon a feeding tube. Her current medication, Sabril, leaves her lethargic and has severe potential side effects, including blindness.
"One study we looked at said that if two anti-epileptics don't work, there's a 10 percent chance that any of them will work," Penn says. "If four don't work, there's a 0.8 percent chance. We've been on six. Nothing has really helped that much. She sleeps 20, 22 hours a day — there's no way she can build any muscle tone or development skills.