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'We were complacent': Mom shares son's scary MIS-C experience after COVID-19

Like others, Erin Thomassen thought her 4-year-old son wouldn't get really sick from COVID-19. But after his experience with MIS-C, she's warning others.
/ Source: TODAY

Nearly two months ago, after Erin Thomassen’s entire family had mild cases of COVID-19, her 4-year-old son, Alex Young, complained that his neck hurt him badly. He could barely pick up his head. Then he developed a 105.1 degree fever. While fever reducers helped, it kept returning with distressing new symptoms.

“It was crazy. His arms and legs were really filled with (fluid) and rashes,” Thomassen, 42, of Sarasota, Florida, told TODAY. “It was really scary so we took him back to the emergency room.”

Doctors realized the toddler had multisystem inflammatory syndrome in children, or MIS-C, a condition that may occur in children who had COVID-19, which can lead to heart damage. The family was shocked and Thomassen shared Alex’s story on Facebook to warn that COVID-19 remains dangerous to everyone — no matter their age.

“We were complacent. We went to the gym without masks. We thought that we were safer because we're all young and healthy,” she wrote in the post that was shared 1,200 times. “It wasn’t real to me until God punched me in the gut. We are blessed that it wasn’t worse.”

Mild COVID-19 infection leads to MIS-C

In June, Thomassen’s husband, Steve Young, came home when his cataract surgery was delayed because he had tested positive for COVID-19. He didn’t have severe symptoms just slight headaches, sniffles and a loss of sense of taste and smell.

Thomassen called her family physician who recommended they monitor their symptoms, all of which remained mild like Young’s. At the end of July, the family of four took COVID-19 tests and they all tested negative, except for Alex.

“He must have been the last one to catch it,” Thomassen explained.

Alex Young became dramatically ill weeks after having COVID-19. The 4-year-old had MIS-C, an inflammatory syndrome that's been linked to the coronavirus in kids. Courtesy Erin Thomassen

A week later, he received another COVID-19 test but this time it was negative. Then he developed a fever and they went to the emergency room for the first time. After returning home, the fever returned and his eyes turned “beet red” with a white circle around his irises among other worrisome symptoms.

“Alex could not walk, he was constantly drenched in sweat, he lost bowel control and his extremities developed a rash and became very swollen,” she said on Facebook.

On the first ER visit, doctors had told Thomassen about MIS-C but didn’t think Alex had it. When they took him in the second time, doctors felt certain that Alex had it and transferred him to the local children’s hospital.

“It was awful,” she said. “It was really scary. They had to hold him down so they could get the IVs in his arms.”

MIS-C resembles Kawasaki disease, a vascular inflammatory syndrome that affects children 5 and younger. Children with this illness experience prolonged fever, rash, red swollen hands and feet, cracked lips and inflammation that can harm the coronary arteries.

While children with MIS-C often have similar symptoms, it affects older children and seems to have more of an impact on the heart. Doctors have found that MIS-C patients often respond well to the Kawasaki treatment, which Alex received during his five days at the hospital. He improved but his long-term prognosis remains unknown.

“They said keep him on this heavy dose of steroids and you’re going to have to bring him back every week to get an echocardiogram,” Thomassen said. “They gave us signs to look for, especially, of course, if the fever would come back … Thank goodness that hasn’t happened yet.”

Before developing MIS-C, Alex Young often joked so much he'd get in trouble. Since being so sick and undergoing serious treatment, he's been a little more serious, but his family is noticing his mood is improving. Courtesy Erin Thomassen

While Alex is slowly getting better, the high doses of steroids makes him act a little moody. It’s been tough for Thomassen to see her son deal with the trauma he experienced. She misses the silly boy who goofed off too much.

“He’s always been just super happy, joking constantly, getting in trouble because he jokes too much,” she said. “We’re starting to see his little smile again.”

His echocardiograms so far show little damage to his heart.

“They’re saying he had very minimal damage,” she said. “They won’t know for sure for a while.”

But the family also learned Young, 49, now has a heart problem that he didn’t have before having COVID-19.

“He has a leaky heart valve, which is brand new, so they’re thinking that more than likely it’s COVID-related,” Thomassen said. There have been recent studies indicating COVID-19 can have lasting damage on heart health.

Warning others

Thomassen shared their story to raise awareness of how COVID-19 can seriously sicken children.

“There’s so much misinformation. We really thought out of the four of us in this house, Alex would be the only one (that would be safe),” she said. “It just completely blew us out of the water. We never heard of anything like this happening with kids.”

She wishes they were more cautious, even though they thought they were protecting themselves from contracting COVID-19.

“I kick myself for being lax about wearing masks in familiar (family) places because of physical distancing. I thumbed my nose at the experts and my little boy suffered the consequences,” she wrote on Facebook.

Erin Thomassen feels remorseful that her family sometimes was lax about wearing masks. But now that they have all had COVID-19 they are being extra careful about following best practices. Courtesy Erin Thomassen

She hopes that others consider wearing masks and washing their hands more. They have become even more cautious.

“Let’s do it for each other,” Thomassen said. “Maybe people will start to think that there are kids that are being affected and we have no idea why. So, let’s just wash our hands and wear masks.”