He had no sore throat or cough. His Covid-19 tests were negative, twice.
Then, what had been a low-grade fever rose to 104.4.
“That’s when I heard something was really wrong,” she said. “Some people’s children have this type of fever, my children never.”
In an update released on Friday, the US Centers for Disease Control and Prevention said there were 2,617 cases of MIS-C in the United States before March 1 and 33 children died. That number has been higher since the beginning of 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 the children have fever, abdominal pain, vomiting, diarrhea, neck pain, rash, red eyes or extra tiredness.
Nolan’s stomach hurt to the touch. His lips were chapped. His tongue was swollen, and when they returned to the pediatrician’s office, his eyes were turning red.
The pediatrician took a look at him, told her to leave the office and go straight to the Ann & Robert H. Lurie Children’s Hospital in Chicago.
“It scared me a lot,” she said.
When they arrived at the hospital, she asked Nolan to read the sign that said where the valet parking was. He said he couldn’t. Everything was blurry.
“He has perfect vision,” said Dunn. “I said to him, ‘Wow, you’re really falling apart.’ “
The hospital did a lot of testing, Nolan said.
“I had all the symptoms you could imagine,” said Nolan. “I had an IV connected to me and I felt tired and sore. My whole body looked upset everywhere. I really don’t know how to explain it or point to a singular feeling.”
The doctors were able to locate the problem and determine that it was MIS-C. They treated him with a 10-hour injection of immunoglobulin and started with a steroid.
“The next morning, he was noticeably better,” said Dunn.
More than half of the reported cases of MIS-C, 59%, occurred in men and the majority in children and adolescents aged 1 to 14, said the CDC. Nolan is 13 years old.
MIS-C also disproportionately affected black children. In its latest update, the CDC said that 66% of reported cases are in Latin children, 842 cases, or non-Hispanic blacks, 746 cases.
MIS-C peaks follow Covid-19 peaks
In recent months, many children’s hospitals, not just Chicago’s, have seen more cases than at the beginning of the pandemic.
“In January, we saw a large number. We saw one a day,” said Dr. Roberta DeBiasi, head of the Division of Pediatric Diseases at the National Institute for Child Research in Washington, DC. “And then, in February, we were on the right track for this or even more, for a few days we have had two or three cases.”
The increase, DeBiasi thinks, is not due to the increase in variants, or any other phenomenon.
Typically, a peak in MIS-C follows a peak in Covid-19 cases.
The MIS-C multidisciplinary committee at their hospital noticed the trend, and as soon as they saw the increase in Covid-19 cases around the holidays, they prepared for children who knew they would be arriving four to six weeks later.
“You can set your schedule for that,” said DeBiasi.
Perhaps because it is so rare, some pediatricians – and parents who seek them out for help – do not know exactly what they are seeing. This was especially true at the beginning of the pandemic.
Tammie Hairston’s son, Kyree McBride, had a stomachache last May.
“At the time, I hadn’t heard of MIS-C,” said Hairston.
At first, she and a few different doctors, including those in the ER, thought it was a routine stomach virus.
Even with Tylenol and Motrin, she said, Kyree’s fever did not go away.
“Instantly, I panicked because my son never gets sick,” said Hairston.
When Hairston had to go back to the store to buy a second bottle of Tylenol and Motrin, she was even more concerned. In addition to the fever, he was lethargic, but could not sleep. Her 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 detected antibodies, suggesting previous infection. Tests also showed that Kyree had inflammation in the heart.
“It was scary,” said Hairston. “But you just need to be a mother and be strong for him.”
She said his family and friends prayed that he would get better.
“We didn’t really know what to expect,” said Hairston. “He’s a child. He’s my baby.”
“I have relatives who had Covid, along with their grandchildren and little ones, and I’m wondering why none of them have MIS-C, but my son does,” asks Hairston. “Not that I am wishing this for any child.”
Hairston enrolled Kyree in another study, hoping other parents won’t have to ask themselves why their son got MIS-C. Perhaps what they can learn from Kyree means that they will not understand in the first place.
Life after MIS-C
Caden Hendricks, 12, and his eldest son had Covid-19 in November. About four weeks after the day, Caden complained of torticollis, stomach pain and a high fever.
Maylan Hendricks took his son to Cincinnati Children’s Hospital, where he spent 12 days.
“One of the things that makes this disease really scary is that you don’t really know exactly what’s going on and causing the problem,” said Hendricks.
Caden 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 study that attempts to understand the long-term effects of severe Covid-19 in children.
“Most of our children are recovering very well, but we don’t know if it will have long-term effects, especially on the heart. This is what we are most concerned about and want to understand most,” Dr. Grant. Schulert, a pediatric rheumatologist at Children’s Hospital in Cincinnati, said.
The hospital asked Caden to return in six months for a cardiology appointment. He also needs follow-up with an ophthalmologist to make sure that there is no long-term damage to his eyes.
Most children seem to be fine after having MIS-C. Although this caused Caden to miss his basketball season, his team gave him the game ball and donned “Caden Strong” T-shirts in his honor. He will be allowed to play basketball in the spring, Hendricks said.
“He is recovering and that is all we can hope for,” he said.
Dr. Sam Dominguez said his hospital, Children’s Hospital Colorado, has also seen “a dramatic increase” in cases from December to February. It is part of a multicenter study that will monitor patients for up to one year to ensure that there are no long-term complications with MIS-C.
“The children we are caring for are very sick and about half to two-thirds need our ICU,” said Dominguez. “Fortunately, most of our children do very well with aggressive therapy.”
Although MIS-C is still relatively rare, Dr. Larry Kociolek, associate medical director of infection prevention and control at Lurie Children’s Hospital in Chicago, expects parents to be aware of MIS-C.
Better yet, he said, he hopes that parents will help their children avoid exposure to Covid-19: make sure that children wear a proper mask, wash their hands frequently and maintain adequate physical distance.
“I think all children are at risk,” said Kociolek. “As with all aspects of this pandemic, people just can’t get comfortable.”