Coronavirus

Rare, mysterious illness linked to COVID-19 hits children in Kansas City, St. Louis

Children’s hospitals in Kansas City and St. Louis are investigating some cases of a mysterious inflammatory syndrome in children that might be connected to COVID-19.

Officials at Children’s Mercy say they are treating one patient for the illness.

St. Louis Children’s Hospital reports cases as well. “It’s something that doctors have had their eye on for a couple of weeks, just to watch out for as we see cases,” said spokeswoman Kendra Whittle. “But I can tell you we’ve seen a couple.”

Doctors are telling parents that the illness is rare.

New York Gov. Andrew Cuomo said Tuesday that the state is investigating about 100 cases of the syndrome. Three children have died from it, including a 5-year-old in New York City.

Common symptoms are a fever, rash, red eyes, swollen hands and feet, abdominal pain and vomiting. Some of the children in New York developed heart inflammation. In most cases, the children currently had the coronavirus or had already had it. Whether this is a complication of COVID-19 is still being studied.

More published data is needed to show how COVID-19 affects children, Dr. Sonja Rasmussen, a former U.S. Centers for Disease Control and Prevention specialist now at the University of Florida, told The Associated Press.

’I don’t think we can be complacent about COVID-19 in children,” she said.

The illness — referred to as pediatric multi-system inflammatory syndrome — was first observed by doctors in the United Kingdom.

Many of these children had tested positive for COVID-19, while some had not,” the British Pediatric Intensive Care Society said in a statement April 27. “It is important to highlight that, both in the UK and in other countries, there have still been very few cases of critically unwell children with COVID-19 admitted to pediatric intensive care units.”

Dr. Jennifer Schuster, a pediatric infectious diseases physician at Children’s Mercy, said the “original alert went out for the UK and shortly thereafter physicians in New York City also started reporting cases as well.

“Pediatric ICU physicians and infectious disease physicians and cardiologists in New York started reporting a similar disease. And since then we’ve heard from many of our colleagues across the country, in Detroit, Atlanta, Boston and other places that they are seeing a similar type of phenomenon.”

A spokeswoman for the Kansas Department of Health and Environment said the department has not received any reports of cases. “However, this is still very new information and as we receive further information, we will make sure to communicate what we know with local health departments and providers,” said Kristi Zears.

A spokeswoman for the Missouri Department of Health and Senior Services said that “Missouri doctors are on the lookout.”

“I would stress too, that this is very rare,” said Schuster. “What we’re hearing from our colleagues in the UK and in New York and around the country, is that this phenomenon, this inflammatory syndrome that’s being linked to COVID-19, is uncommon.”

Dr. Jennifer Schuster, pediatric infectious diseases physician at Children’s Mercy.
Dr. Jennifer Schuster, pediatric infectious diseases physician at Children’s Mercy. Courtesy Children's Mercy

What is it?

First reports suggested that the children had Kawasaki disease, which some people confuse with hand, foot and mouth disease, a common viral infection in children.

Kawasaki disease is a rare illness that mostly affects children from birth to age 5, but sometimes affects children up to age 13, according to the Saint Luke’s Health System. It tends to afflict more boys than girls.

It is a type of vasculitis, an inflammation of the blood vessels. Children usually get a fever, “and it’s a fairly high fever … 102 range, a significant fever,” said Dr. Sarah Boyd, an infectious disease specialist with the Saint Luke’s system.

“And it tends to last longer. So (with) a lot of childhood illnesses, a fever might be short, a day or two, and then it kind of goes away. This tends to last longer … more than three to five days.”

Like hand, foot and mouth disease, it causes a rash “and also causes mucositis, which is a kind of inflammation of mucus membranes,” said Boyd.

“There’s kind of a classic (symptom) where the lips get red and cracked, and there’s what’s called a strawberry tongue … where the tongue is bumpy like a strawberry.”

The hands and feet can swell and become red, too, said Boyd.

Children with this new inflammatory syndrome have had similar symptoms. An alert issued last week by the New York City Health Department said that it had identified 15 patients between the ages of 2 and 15 who had been hospitalized with the new illness in the city’s pediatric intensive care units between April 17 and May 1.

The alert said clinical features of the illness “have been noted to include features of Kawasaki disease or features of shock; however, the full spectrum of disease is not yet known. All patients had subjective or measured fever and more than half reported rash, abdominal pain, vomiting, or diarrhea.”

Respiratory symptoms — known hallmarks of COVID-19 — were reported in less than half of the patients, according to the alert.

“What is actually being described is different from Kawasaki disease,” said Schuster. “I think as we learn more this is actually a really unique entity, something different than Kawasaki disease.”

Unlike Kawasaki disease, which mostly affects toddlers, UK physicians saw the disease in older children, too, she said.

“We know with Kawasaki disease that kids on occasion can require care in the intensive care unit. But it’s unusual,” said Schuster. “And so what these ICU physicians were reporting was a much larger number of patients had features that looked like Kawasaki disease but these children were much sicker and required ICU care.”

Dr. Sarah Boyd, an infectious disease specialist with the Saint Luke’s Health System.
Dr. Sarah Boyd, an infectious disease specialist with the Saint Luke’s Health System. Courtesy of Saint Luke's

Amber Dean, a mother in western New York, watched the illness make her 9-year-old son so sick he ended up in intensive care.

“It’s a pretty scary thing, watching your child be hooked up to all these wires and IVs and there’s nothing you can do,” Dean told The Associated Press.

She had just recovered from a mild case of COVID-19 and she and her family were ending quarantine in their home in Hornell when Bobby got sick.

“At first it was nothing major, it seemed like a tummy bug, like he ate something that didn’t agree with him,” she said. “But by the next day, he couldn’t keep anything down and his belly hurt so bad he couldn’t sit up.”

Bobby tested positive for the coronavirus and spent nearly a week in a hospital before he went home on Mother’s Day.

“It never affected his respiratory system, it was his heart that it affected,” Dean said. “They’re hoping he pulls through with 100% recovery but they said there have been children with lasting effects.”

What to look for

Doctors don’t know yet what’s causing the illness, or how it might be connected to COVID-19.

Many of the young patients were positive for the coronavirus when tested with nasal swabs, Schuster said. But the majority tested positive when tested for antibodies, she said, which could mean this new syndrome is an aftermath of the virus.

“By the time these children are presenting, many times the virus isn’t detected in their respiratory tract anymore, and they’ve actually already mounted an antibody response, meaning they are mounting their immune response to the virus, which generally is what we see when kids are starting to recover or have already recovered,” she said.

Schuster said doctors are seeing children with “incredibly high amounts of inflammation …usually a signal related to an overactive immune response.

“So what we don’t know yet is whether this is a direct effect of the virus, or whether this is something that happens after recovery from infection. We’re still trying to learn more.”

Schuster said parents of children who develop new symptoms — including rashes, red eyes, reddened lips or tongues — who don’t need immediate medical attention should call their pediatrician. Or, they can call the hospital’s Nurse Advice Line — 816-234-3188, she said.

“I would stress … that this is very rare,” Schuster said.

People can check the hospital’s website and social media accounts for more information, she said, “because those are things we can update incredibly rapidly when we get new information so that we can provide everybody with the best information possible.

“I think it’s important for community providers and parents and families to know that this information is rapidly changing.”

This story was originally published May 13, 2020 at 12:05 PM.

Lisa Gutierrez
The Kansas City Star
Lisa Gutierrez has been a reporter for The Kansas City Star since 2000. She learned journalism at the University of Kansas, her alma mater. She writes about pop culture, local celebrities, trends and life in the metro through its people. Oh, and dogs. You can reach her at lgutierrez@kcstar.com or follow her on Twitter - @LisaGinKC.
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