On July 13, 2010, Ashly and Luke Matzek's baby boy Bennett awoke "barely breathing, gasping for air."
"If it wasn't for me, Bennet would have never been diagnosed," Ashly Matzek later wrote in a description of events.
First, she took Bennett to an Olmsted Medical Center physician who blamed a virus and said it should be allowed to run its course. He diagnosed bronchitis and prescribed antibiotics.
Bennett got worse, so he saw another doctor again the same day. "They told me it was a virus and to let the meds work," Matzek said.
Recognize a red flag
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"As a parent, I knew something was wrong, and they kind of just brushed me off," she said.
If you knowsomething's wrong with your child, but you're not getting answers, keep pushing because, like her child, your baby might eventually get a life-altering diagnosis like Kawasaki disease , she suggests.
By July 14, Bennett had bright red eyes, a rash on his feet, hands and belly button, was breathing irregularly and had an aggressively high temperature, Matzek said, all key signs of Kawasaki.
Another doctor incorrectly diagnosed hand, foot and mouth disease — and prescribed a different antibiotic.
At midnight July 15, Bennett "stopped breathing for 2 seconds (and) looked so unbelievably sick I didn't think I would make it to the ER," Matzek said.
The Mayo Clinic ER team took one look at Bennett and had him admitted. They put him on strong antibiotics and fluids because he wasn't drinking formula, Matzek said.
His condition improved by early morning. Doctors thought perhaps he really did have a simple virus. On Friday morning, Bennett was discharged to go home — still with a temperature of 102 degrees, his mother said.
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But Saturday morning he still wasn't eating and his lips were so dry, they cracked and began bleeding. A return to the ER resulted in more tests, and more negative results, even though Bennnett remained "incredibly sick," according to his mother.
On July 19, Bennett went to a scheduled OMC appointment. Because he'd had a fever for six days, the possibility of Kawasaki disease was finally considered a possibility.
"It is very rare and not much is known about the disease," Matzek wrote.
After getting admitted to pediatrics at Mayo Clinic and receiving initial effective treatment for Kawasaki disease, Matzek wrote on July 21 that "Bennett was a happy, happy baby again."
Importance of recognition
About 4,200 children each year are diagnosed in the U.S., says the Kawasaki Disease Foundation . It is the leading cause of acquired heart disease in children, the foundation says.
As a result of the 10 days it took for Bennett to get a diagnosis, he has developed aneurysms, only about the sixth or seventh child with a heart aneurysm seen at Mayo Clinic, according to his mom.
Kawasaki was discovered in 1967 by a Japanese doctor of the same name. "If they don't treat it right away, they end up with these lifelong problems," Matzek said.
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"The fever is huge. It's a high fever you can't bring down, 102, 103, 104," Matzek said. A toddler like Bennett gets inflamed joints and won't stand or walk because of the pain.
If you feel your child is waving a metaphorical red flag, keep asking for help, Matzek said. "I thought he was going to die so many times. That's how sick they get," she said.
