Sixteen-year-old Karmen Reeves can tell you the exact day her life became like a topsy-turvy carnival ride: “It was Sept. 1, 2019, at the Mariposa County Fair. I was on the Hammer ride with a friend and I just went out.”
She “went out” twice on the Hammer as it swung her back and forth and upside down 22 times a minute. She blacked out again on the next ride and two more times walking to the car with family friends. They took her straight to the nearest hospital in Mariposa where doctors ran all sorts of tests.
“We figure she passed out 30 times over the next four hours,” her mom Amanda Reeves describes.
Over the next year Karmen swung between specialists and medical tests to figure out why she was fainting 10 to 15 times a day. Karmen had to give up the sports she loved, take classes online (before the pandemic) and stop doing the things most normal teenagers do.
A high school friend with another rare condition that caused similar, frequent blackouts suggested they try her neurologist, Dr. Timothy Foster, who heads the pediatric Dysautonomia Clinic on the Community Regional Medical Center campus in Fresno. After one conversation with the Reeves family, Dr. Foster suspected Karmen had the often misdiagnosed condition.
Unless dysregulation episodes are severe or as frequent as Karmen’s they often go undiagnosed. “If you just look at one thing, you are not going to find it,” says Dr. Foster, an assistant professor with UCSF Fresno department of pediatrics.
It takes multiple tests and specialists coming together to collaborate, identify and treat the condition.