My daughter, Rory, was fully vaccinated on schedule from birth to first grade. Our insurance didn’t cover immunizations when she was a toddler, so I dutifully took Rory to the local health department for her shots. I would hug her wriggling body tightly as nurses zeroed in on her chubby thighs, the needle’s quick pinch causing Rory to cry.
As the nurses put cartoon character bandages on each of her legs, I would tear up, too. I hated to see her in pain — even momentarily — but I never hesitated when it was time for her vaccines. That changed when she was six years old.
One morning, Rory woke up and told me her new gym shoes she’d been wearing all week felt “weird.” We were already late for school, so I tried everything I could to get her into the shoes — cajoling, bribing, and finally, using a stern voice and her full name. Nothing worked. I hauled a pair of shoes she had outgrown from the back of her closet, and Rory crammed them on her feet. She wore those until they, too, felt “funny.”
Soon these sensory issues were accompanied by insomnia and a personality change. My sweet little girl became defiant and aggressive. Rory began conversing with herself, or perhaps, because she was hallucinating, she was talking to someone she thought was there. Her speech made little sense to those around her, and it eventually became like a tossed salad of words that didn’t belong together.
Rory listed like a swamped ship when she walked for a time, eventually moving less until she sat mute and catatonic, her body writhing involuntarily. Her dilated pupils, like dark puddles, obscured her lovely brown eyes, and she stared vacantly into the distance as if she were trying to see something far away. It was a frightening, exhausting, confusing time, made worse because doctors didn’t know what was wrong or how to help Rory.
We spent three years desperate for a diagnosis. She finally received one: autoimmune encephalitis, a recently discovered disease where the immune system mistakenly attacks healthy brain cells and leads to neurologic and psychiatric symptoms. No one knows what causes this disease, though the prevailing theory is that a virus triggers an inappropriate immune response. Untreated, AE can cause permanent disability or death.
Over the next four years, a team of doctors at Duke Children’s Hospital in Durham, North Carolina, rebooted Rory’s immune system. They gave her steroids to reduce the inflammation in her brain. She took an immune-suppressing medication, frequently used by transplant patients to prevent organ rejection, to stop her immune system from producing autoantibodies. Intravenous immunoglobulin, a breathtakingly expensive medicine made from thousands of donors’ plasma, provided Rory with a monthly infusion of healthy antibodies.
