He had no sore throat or cough. His Covid-19 tests came back negative, twice.
Then what had been a mild fever rose to 104.4 degrees.
“That’s when I knew something was really wrong,” he said. “Some people’s children increase that kind of fever, my children never do.”
In an update released Friday, the US Centers for Disease Control and Prevention said there have been 2,617 cases of MIS-C in the United States before March 1 and that 33 children have died. That’s more than in early February, when 2,060 cases and 30 deaths were reported.
‘It scared me a lot’
The CDC advises parents or caregivers to contact a doctor immediately if children have a fever, abdominal pain, vomiting, diarrhea, neck pain, rash, bloodshot eyes, or additional fatigue.
Nolan’s stomach ached to the touch. His lips were chapped. Her tongue was swollen, and when they got back to the pediatrician’s office, her eyes were turning bright red.
The pediatrician took one look at him, told him to get out of his office and head straight to Ann & Robert H. Lurie Children’s Hospital in Chicago.
“It scared the hell out of me,” he said.
When they got to the hospital, he asked Nolan to read the sign that told them where the valet service was. He said he couldn’t. Everything was blurry.
“He has perfect vision,” Dunn said. “I said, ‘God, you’re really falling apart.’
The hospital ran a lot of tests, Nolan said.
“I had all the symptoms you can imagine,” Nolan said. “They put me on an IV and I felt fatigued and sore. My whole body felt altered everywhere. I really don’t know how to explain it or identify a singular feeling.”
Doctors were able to identify the problem and determined it was MIS-C. They treated him with a 10 hour immunoglobulin drip and started him on a steroid.
“The next morning he was noticeably better,” Dunn said.
More than half of the reported MIS-C cases, 59%, were in men and the majority in children and adolescents ages 1 to 14, the CDC said. Nolan is 13 years old.
MIS-C has also disproportionately affected children of color. In its latest update, the CDC said that 66% of reported cases are in Latino children, 842 cases, or non-Hispanic blacks, 746 cases.
MIS-C surges follow Covid-19 spikes
In recent months, many children’s hospitals, not just Chicago’s, saw more cases than they had before in the pandemic.
“In January, we saw a lot. We saw one a day,” said Dr. Roberta DeBiasi, chief of the Division of Pediatric Diseases at the National Institute for Children’s Research in Washington, DC. “And then in February, we were on our way for that or even more, there are some days that we have two and three cases.”
The increase, DeBiasi thinks, is not due to the increase in variants or any other phenomenon.
Typically, an increase in MIS-C follows an increase in Covid-19 cases.
The multidisciplinary MIS-C committee at their hospital noticed the trend, and as soon as they saw the spike in Covid-19 cases over the holidays, they braced themselves for the kids they knew would soon be coming four to six weeks later.
“You could set your calendar,” DeBiasi said.
Perhaps because it is so rare, some pediatricians, and the parents who come to them for help, do not know exactly what they are seeing. That was especially true at the beginning of the pandemic.
Tammie Hairston’s son, Kyree McBride, suffered a stomach ache last May.
“At the time, I hadn’t heard of the MIS-C,” Hairston said.
At first, she and a few different doctors, including those in the ER, thought it was a routine stomach bug.
Even with Tylenol and Motrin, he said, Kyree’s fever wouldn’t go away.
“Instantly, I went into panic mode because my son never gets sick,” Hairston said.
When Hairston had to go back to the store for a second bottle of Tylenol and Motrin, he became even more concerned. In addition to the fever, he had become lethargic, but could not sleep. His heart was racing. His eyes started to turn red.
At Children’s National, doctors confirmed that Kyree had MIS-C. He never tested positive for Covid-19, but the tests did detect antibodies, suggesting a previous infection. The tests also showed that Kyree had inflammation in her heart.
“It was terrifying,” Hairston said. “But you just have to be a mom and you have to be strong for him.”
She said her family and friends prayed for her to get better.
“We really didn’t know what to expect,” Hairston said. “It’s a boy. It’s my baby.”
“I have family members who have had Covid, along with grandchildren and little ones, and I wonder why none of them had MIS-C, but my son did,” asks Hairston. “Not that I’m wishing this on just any kid.”
Hairston enrolled Kyree in another study, hoping other parents won’t have to wonder why their child has MIS-C. Maybe what they can learn from Kyree means they won’t get it in the first place.
Life after MIS-C
Twelve-year-old Caden Hendricks and her oldest son had Covid-19 in November. About four weeks into the next day, Caden complained of a stiff neck, stomach pain, and a high fever.
Maylan Hendricks took her son to Cincinnati Children’s Hospital, where he spent 12 days.
“One of the things that makes this disease really scary is that you really don’t know exactly what’s going on and what’s causing the problem,” Hendricks said.
Caden has recovered. Still, doctors aren’t sure what recovery means and what long-term problems MIS-C can bring, if any.
Cincinnati Children’s Hospital is enrolling patients in a large NIH trial trying to understand the long-term effects of severe Covid-19 in children.
“Most of our children are recovering quite well, but we don’t know if this is going to have long-term effects, particularly on the heart. That’s what worries us the most and we want to understand,” said Dr. Grant. Schulert, a pediatric rheumatologist at Cincinnati Children’s Hospital.
The hospital asked Caden to return in six months for a cardiology appointment. You also need a follow-up with an ophthalmologist to make sure there is no long-term damage to your eyes.
Most children seem fine after having MIS-C. Although he caused Caden to miss his basketball season, his team gave him the game ball and he wore “Strong Caden” jerseys in his honor. He will be allowed to play basketball in the spring, Hendricks said.
“He’s on the mend and that’s all we can hope for,” he said.
Dr. Sam Domínguez said his hospital, Children’s Hospital Colorado, also saw “a dramatic increase” in cases between December and February. It is part of a multicenter study that will follow patients for up to one year to ensure there are no long-term complications from MIS-C.
“The children we are seeing are quite sick and between half and two-thirds need our ICU,” Domínguez said. “Fortunately, most of our children do very well with aggressive therapy.”
While MIS-C is still relatively rare, Dr. Larry Kociolek, associate medical director for infection prevention and control at Lurie Children’s Hospital in Chicago, hopes parents will keep an eye out for MIS-C.
Better yet, he said, he hopes parents will help their children avoid exposure to Covid-19: Make sure children wear a well-fitting mask, wash their hands frequently, and maintain proper physical distance.
“I think all children are at risk,” Kociolek said. “As with all aspects of this pandemic, people just can’t get comfortable.”