A mysterious COVID syndrome still stalks N.J.’s kids. Doctors remain on alert as cases rise. – NJ.com

The doctors knew young Johnny Bowden was very sick.

They just didn’t know why.

The 9-year-old Mount Olive boy lay in a hospital bed, hooked up to wires and beeping machines. A team of specialists ran test after test, searching for the cause of mysterious symptoms that sent him to the pediatric ICU at Morristown Medical Center.

Johnny had a high fever, abdominal pain and vomiting. At first, doctors told Michele Mielko that her son just had a virus. But three days later, she rushed him to the emergency room a second time.

Doctors were stumped. Was it a virus? Was it the coronavirus, which he had tested positive for weeks earlier? Or was it something else?

“It was scary,” Mielko said, “but I had to just put my faith in the doctors and the nurses.”

Johnny was eventually diagnosed last month with a new, life-threatening illness that has puzzled experts since the early days of the COVID-19 pandemic: multisystem inflammatory syndrome (MIS-C). The rare, enigmatic disease associated with the coronavirus is another grim gift from the pandemic. And it targets children.

While the number of MIS-C cases remains small, it continues to rise nearly a year after COVID-19′s emergence in New Jersey.

The state has reported 88 cases of the pediatric syndrome as of Friday, affecting kids from infants to older teenagers. No children have died in New Jersey, although three are currently hospitalized with MIS-C. The state has recorded 22 new cases since Dec. 21.

Cases are growing nationwide as well. There have been 2,060 cases and 30 deaths since the Centers for Disease Control and Prevention began tracking MIS-C in mid-May. More than 400 cases and four deaths were reported just between Jan. 8 and Feb. 8.

“It’s not so much an infection, but a post-infectious problem,” said Dr. Margaret Fisher, a pediatric infectious disease expert and special advisor to New Jersey Health Commissioner Judy Persichilli. “So it’s a problem with your immune system after you got the (coronavirus) infection.”

Many questions remain unanswered: Why do some children develop MIS-C after contracting COVID-19 but not others? Why does it progress so quickly? What are the long-term effects?

The large majority of New Jersey’s MIS-C patients “have recovered completely,” Fisher said. But the syndrome is difficult to diagnose, exhibiting a variety of symptoms with no clear-cut test to detect it.

Doctors remain on alert, knowing MIS-C can rapidly intensify and cause cardiac failure.

“It’s an imbalance of your immune response,” Fisher said. “So you have way too much inflammation going on. The virus, itself, is kind of gone — but your body is still trying to fight it off. And that inflammation turns out to do more harm than good.”

Children began showing up in emergency rooms with strange symptoms in the spring.

Red or bloodshot eyes. Rashes. Swollen hands and feet. Long-lasting fevers. And most concerning of all, serious heart issues.

The symptoms didn’t make sense, Dr. Jennifer Owensby told herself in late April.

This was something new.

“Kids [were] starting to come in with what looked like Kawasaki disease, which is kind of an autoimmune post-inflammatory disease,” said Owensby, a pediatric critical care physician at the Bristol-Myers Squibb Children’s Hospital at Robert Wood Johnson University Hospital.

But Kawasaki — a disease known to doctors since the 1960s — generally affects children younger than 2 years old. These patients were older.

“They were like 6 to 18,” Owensby explained. “They were middle school children, young teenagers, and they were presenting with a lot of the same features. But one of the biggest things we saw was really severe cardiac failure, which can be seen in Kawasaki, but is very, very uncommon.”

The mysterious phenomenon started as a trickle. Soon dozens of cases were emerging in the Garden State, New York and the United Kingdom in late April and May. Doctors were bewildered.

Ten months later, many still are.

“This virus has been a twisting, turning journey,” said Dr. Lawrence Kleinman, professor and vice-chair for academic development in Rutgers Robert Wood Johnson Medical School’s department of pediatrics. He was recently awarded a $1.6 million grant from the National Institutes of Health to research which children are at the highest risk for developing severe COVID-19 illness.

“And at every turn, when something could have given us a break … every surprise has made our work more challenging and has contributed to the virus’ threat to the public,” Kleinman added.

More than 663,000 coronavirus cases have been recorded in New Jersey and 27.5 million nationwide. But only 2,000 kids in the U.S. have been impacted by the multisystem syndrome, giving doctors relatively few opportunities to learn how to prevent or treat it.

Also confounding is the range of symptoms that can stem from MIS-C, which impacts children of color and boys at greater rates. Johnny, oddly, didn’t have many of the common symptoms.

The third-grader had no rash, no swollen hands and feet and no strawberry tongue. He did have a fever of 102.3 degrees for a few days.

”That’s kind of what was perplexing,” said Michele, who works as a food safety coordinator for a powdered beverage company in Mount Olive. “The doctors in the ER … would come in and check his hands and feet. He didn’t have that.

“He did have some stomach pain on his right side. But I think because he wasn’t presenting these kind of classic outward symptoms, they were a little bit stumped.”

Michele Mielko thought she got lucky.

She tested positive for the coronavirus in December, but recovered after developing only mild congestion and gastrointestinal symptoms. While she isolated at home, Johnny stayed with his father, David Bowden.

Johnny tested positive himself on Dec. 23, but felt fine and showed no symptoms.

Michele called him every day as they quarantined separately, making sure he was healthy. Then on Jan. 8, she picked him up from his dad’s home.

“We figured we were both out of the woods,” Michele said.

The following day, Johnny’s first symptoms emerged. Fever. Vomiting. Fatigue. And they progressed “very rapidly,” Michele said.

After testing negative for the flu, his pediatrician told Michele about another possibility.

“This is very rare, but there’s something called MIS-C, which is like a post-COVID inflammatory syndrome,” the pediatrician said. “He probably doesn’t have it. It’s rare. But I’d like you to go to the emergency room and get him blood work just to test for it.”

Michele was aware of MIS-C, having seen it mentioned in media reports. But Johnny was a healthy boy, athletic and a soccer player.

“I’m like, ‘You know, I probably don’t have to worry,’” she said.

Michele took Johnny to Morristown Medical Center, the top-rated hospital in New Jersey, according to Newsweek and U.S. News & World Report. Initial tests revealed he only had a virus, she said. Doctors said it should clear up in about 72 hours.

But Johnny’s symptoms didn’t improve. Michele brought him back to the hospital Jan. 12, when he was admitted to the pediatric ICU and placed in a negative pressure isolation room. Then an entire team of doctors examined him, trying to determine a diagnosis.

There was a pediatrician. A hematologist in case of blood clotting. A rheumatologist because MIS-C can cause inflammation. A cardiologist because internal inflammation can damage the heart. And an infectious disease doctor because he had tested positive for the coronavirus.

The team of doctors debated what was wrong.

“I remember the rheumatologist told me that she thought it was post-COVID because there was none of the rash or the inflammation in his joints, like no swollen hands or feet,” Michele said. “And then the infectious disease doctor told me that he wasn’t presenting with the rash or anything like that, she said, but his blood markers were really high … like internal inflammation markers.”

The infectious disease doctor kept referencing C-reactive protein, a measurement of protein in the blood. When it rises, it signals inflammation.

“And it’s supposed to be at a nine,” Michele said. “And his was around 243.”

It was that reading that led doctors to diagnose MIS-C. They began giving Johnny intravenous immunoglobulin, an antibody treatment found to be effective in combating the syndrome.

He quickly responded to treatment. Soon all he wanted to do was go home to his cat, Tori, and his betta fish, Jaws.

“He was like, ‘Get me out of here. I want to go home,” Michele said.

Johnny would spend about a week in the hospital.

The absence of a concrete test might be the biggest complication in diagnosing MIS-C. So doctors have to eliminate other possibilities while searching for inflammation.

“One of the criteria for MIS-C is the exclusion of other diseases,” said Dr. Cecilia Di Pentima, director of pediatric infectious diseases at Morristown Medical Center’s Goryeb Children’s Hospital, which is part of Atlantic Health System.

She was part of the team that treated Johnny. She agreed to speak about MIS-C broadly, but declined to discuss specifics about an active patient.

Diagnosing MIS-C often requires doctors of different disciplines and special equipment — equipment pediatricians often don’t have. That complexity makes awareness and education vital, especially when dealing with patients like Johnny, who may not present classic MIS-C symptoms.

“Within that spectrum of how critically ill the patient is, sometimes we can’t really wait for some of the results to come back,” Di Pentima said. “We have to act faster.”

Johnny’s bout with MIS-C emerged as cases rose across the nation.

Fisher, who receives daily briefings on the syndrome, said the recent increase dovetails with the second wave of COVID-19.

There was a flood of syndrome cases in late April and May after the first wave of the coronavirus washed across the state in the spring. And doctors are seeing another round now following the second wave of the virus.

“It really started to go up in October, November,” Fisher explained. “And now we’re starting to see the cases of MIS-C in December and January. … I suspect we’re going to continue to see cases because, while the adult disease is dropping, it’s not dropping that quickly. It’s slowly dropping.

“So as long as there’s disease out there, we’re going to continue to see this problem in children.”

The state Health Department continues to monitor the kids who have recovered ”because we want to know: Is there any long-term effect on their hearts? And are there any other long-term effects that we wouldn’t have anticipated?” Fisher said.

But the disease largely remains a mystery.

Looking back, Michele is stunned her son contracted such a rare disease — one that seemed to come out of nowhere.

She hopes Johnny’s story will raise awareness among other parents, so they recognize the symptoms and immediately seek treatment.

“This is a rare syndrome and it probably — unlikely — won’t happen to your child,” Michele says, “but just be aware of what the signs are because it can get bad very, quickly.”

Our journalism needs your support. Please subscribe today to NJ.com.

Spencer Kent may be reached at skent@njadvancemedia.com.