SALT LAKE CITY — Doctors across the country are trying to learn more about a new condition that seems to only affect kids who have recovered from COVID-19.
According to the CDC, multisystem inflammatory syndrome in children (MIS-C) was only found in 694 children as of August 20, 2020.
There have been 11 reported deaths.
The CDC does not release MIS-C case numbers on a state-by-state basis "because of the small number of cases in most states and to protect the privacy of patients and their families."
Utah is reported to have anywhere from 1-10 reported MIS-C cases.
“It may be extraordinarily rare. It may just be very rare,” said Dr. Andrew Pavia, an epidemiologist with U of U Health and Primary Children’s Hospital.
MIS-C seems to only affect children who were previously diagnosed with COVID-19.— Adam Herbets (@AdamHerbets) August 27, 2020
It's very rare. Some patients tell me it's worse than the virus.
The CDC does not release exact case counts on a state-by-state basis.
According to this chart, Utah has had "1-10" reported cases. pic.twitter.com/B2XHVUpzi5
Dr. Pavia described MIS-C as an overreaction of the immune system, causing it to start attacking parts of the patient’s body.
Common symptoms are a fever, headache, skin rash, and a bad stomach ache due to the inflammation of the patient’s organs.
It typically affects children about four weeks after COVID-19.
Benjamin Allen, an 11-year-old who lives in Kingman, Arizona, said he remembers recovering quickly from his coronavirus symptoms.
“The symptoms were very mild,” Benjamin said. “Headache mainly.”
Benjamin’s parents weren’t so lucky when they contracted the virus.
“We were on the couch, day in and day out. We thought we were going to die!” mother Cindy Allen said. “(Ben) was still playing Fortnite, so I knew he wasn’t too terribly sick!”
Benjamin and his siblings helped take care of their parents. About four weeks later, he started having new symptoms and a new diagnosis.
“Once we had (COVID-19) we thought, ‘We’re clear – free and clear – we’re good to go!’ Allen said. “We didn’t think much of it.”
Benjamin was taken to a hospital in Las Vegas with a high fever and severe stomach pains. Doctors initially thought he needed his appendix removed.
Allen wasn’t immediately allowed to see her son in the P-ICU due to COVID-19 restrictions.
Even after the surgery was complete, the problems persisted.
“It’s scary because I don’t know how long I’m going to be in the hospital,” Benjamin said.
“I cried harder than I’ve ever cried before because I’m leaving my baby in the hospital, and I can’t even be there,” Allen said.
Eventually doctors diagnosed Benjamin with MIS-C.
He now takes regular injections of Kineret, a medicine that’s typically used for arthritis. Doctors are not sure what the long-term effects of MIS-C might be.
Allen is concerned about potential inflammation of her son’s heart muscle.
“Well, I would like to go back to school again, but if I get sick again? I’d rather stay home!” Benjamin said.
Allen said she wanted to share her son’s story because, even if COVID-19 symptoms might not be as severe for kids, she feels like parents should still be careful.
Benjamin’s case of MIS-C may have been considered “mild,” because he wasn’t on a ventilator.
Allen has seen people protesting the use of masks in Utah and Arizona, and she has a message for those parents.
“My perspective has changed,” Allen said. “Now I wear masks. I make the kids wear masks… You don’t have to protest and be rotten about it. You just have to be smart. We stay home.”
Dr. Pavia said he will continue to have concerns about MIS-C until it’s understood fully. Because MIS-C affects recovered COVID-19 patients, the best method of prevention should sound familiar: regular hand washing, social distancing, and wearing a mask.
“I think it’s time for a somewhat harder message… the effects of the pandemic are going to go on for a long time,” Pavia said. “Even though children are dramatically spared of most of the bad complications of COVID-19, you still want to protect your kids from getting infected.”