4 Your Health

Mysterious disease causes frustration for local families

CREATED Mar 11, 2014

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MILWAUKEE - Rachel Siegel loves to post YouTube videos with her dad--showing things like gardening, crafts, and cooking. 

They look like a family who could figure out how to do anything, but they couldn't figure out how to help Rachel when she would get sick, and couldn't stop throwing up.  Her mom Mary recalls, "We often wondered as parents, were we doing something wrong?  Were we missing something?"

Rachel and her parents made lots of trips to the E.R., but never got answers.
Rachel's dad Jamie explains, "We were all scared, and I felt helpless, and sometimes I'd get angry.  And I'd be upset."

It started when Rachel was 4.  Out of the blue she would get sick--so sick she couldn't eat, drink, or even talk, but her parents didn't know why.

"For all outward appearances this can look like so many different things," Mary laments.

Dr. B Li of Children's Hospital of Wisconsin admits cyclic vomiting syndrome is a mysterious illness.  "Under recognized, under appreciated, and still unknown."  He adds, "You have stomach flu, superimposed on sea sickness, and you can't get rid of it."

The vomiting doesn't stop because the nausea comes from your brain, not your stomach.  It's relentless until the episode just stops.  Sometimes hours.  Sometimes days, but because there isn't a test for the syndrome, it often goes undiagnosed.  

"As these children get older, they often give up the vomiting, and they will get migraine headaches as teenagers," Dr. Li says.
Rachel now has migraine medicine to take when she feels an episode coming, and knowing the cause is a relief to the family.

"A life preserver was thrown out to us," Jamie exclaims.

Rachel adds, "I know that I'm not the only one.  I'm not this weird person who has this weird thing inside of their body. I know its something that other kids have. It doesn't make me feel so alone."

Its not just kids.  Some adults are also affected by CVS.  The national organization for CVS is located in Brookfield. 

To learn more about this condition, click here.