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Macomb County boy, 7, recovers from pediatric rare syndrome linked to COVID-19

child sitting on hospital bed with teddy bear
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Hannah Peck doesn't know how or when her son was exposed to novel coronavirus.

He never had any symptoms of COVID-19, and her family has been following social distancing guidelines during the stay-at-home order.

So when Levi Nobles got sick in early May, a few days after his seventh birthday, she didn't suspect it had anything to do with the virus.

"I thought it was just a stomach bug going on," said Peck, 29, of Shelby Township. He was vomiting and had a fever, so, "that's what I thought it was."

But when Levi's symptoms dragged into a fourth day, Peck brought him to the pediatrician. The doctor was concerned there could be COVID-19 involvement.

Reports had emerged from around the world about children like Levi who were exhibiting symptoms of a newly identified pediatric inflammatory syndrome linked to the virus with some symptoms similar to Kawasaki disease.

Levi had a couple of its identifying symptoms, too: red, dry, cracked lips and unusually bloodshot eyes.

At least 33 children in Michigan now have been diagnosed with the same rare condition as of May 22, according to the Michigan Department of Health and Human Services.

Nationally, there have been hundreds of cases reported just in the last few weeks. New York state reported 161 children with symptoms as of May 22, and three deaths. Of the New York cases, 92% tested positive for COVID-19 either by diagnostic, antibody testing or both, according to the state Department of Health.

The U.S. Centers for Disease Control and Prevention dubbed it Multisystem Inflammatory Syndrome in Children, or MIS-C, and issued an advisory May 14, asking doctors to watch for and report cases to public health officials. Children with this condition can have any of the following symptoms:

  • Fever
  • Bloodshot eyes, cracked lips or bright red tongue
  • Rash
  • Abdominal pain
  • Diarrhea
  • Vomiting
  • Neck pain
  • Extreme exhaustion

The syndrome also can cause inflammation in different parts of the body, including the heart, lungs, kidneys, brain, skin, eyes, and gastrointestinal organs.
When the disease attacks children's hearts and lungs, it can be especially dangerous. Some of the kids who've developed this condition have needed intensive care, and have been so sick they needed a ventilator to help them breathe or an artificial heart and lung machine known as ECMO (Extracorporeal Membrane Oxygenation).

"The hallmarks seem to be a very sick child, and generally speaking, a child with low blood pressure and evidence of shock," said Dr. David Kimberlin, editor of Red Book, the Report of the Committee on Infectious Diseases for the American Academy of Pediatrics. "There may be some abdominal pain, some diarrhea. ... They also may have a rash. They may not. They may have red eyes. They may not."

It's also affects a wide age-range of children — from the very young to older teens, Kimberlin said, citing research that suggests the average age of those affected is 8-10 years old.

While an association has been made between this syndrome and novel coronavirus, it's too soon to say definitively that they're connected.

"This hyper inflammatory syndrome ... has been showing up in areas of the world where, within the prior three or four weeks, the COVID-19 virus had started circulating, and most but not all of these children test positive in some form or fashion for the COVID virus," said Kimberlin, who also is a professor of pediatrics at the University of Alabama at Birmingham.

"So there's a temporal association — COVID in the community, three or four weeks later, these rare cases of children with this hyper inflammatory syndrome being recognized — but there's not a causal association yet.

"My suspicion is that there will be, but it's not proven yet. ... I don't think we've quite connected those dots."

A scary ordeal

Levi's pediatrician urged Peck to bring her son to the hospital.

"The doctor looked at him and said, 'You need to get ... him checked out for what all these kids were getting, this Kawasaki-like syndrome going on," Peck said.

She took him to Beaumont Hospital, Troy, which then they transferred him by ambulance to Beaumont Children's in Royal Oak.

There, Dr. Bishara Freij, chief of pediatric infectious disease at Beaumont Children's, evaluated Levi for MIS-C.

So far in the pandemic, Freij has treated six kids with the condition, and they all had similar symptoms: persistent fever, gastrointestinal pain, diarrhea or vomiting, and red eyes. Some, but not all, have had rashes, too.

"Most of them have had heart function problems," said Freij. "So the heart muscle is not functioning as well, based on echocardiograms and some laboratory tests. They all have markedly inflamed body systems. Based on the markers we use, ... they're not just high, they're quite high.

"We're seeing rapid progression as well."

The children Freij has treated all have tested positive for coroanvirus antibodies, too, which means they had previous coronavirus infections, even if they didn't know it.

"They might have acquired the COVID-19 infection, had no symptoms and then suddenly they show up with these illnesses, which is basically the immune system going haywire on them, overreacting, going into overdrive, and, in the process, hurting the child," Freij said.

The disease is new, Freij said, so doctors don't know what might trigger it in some children, but not others. But some of his patients are participating in research to try to find immune system clues that may answer those questions.

For Levi, the symptoms seemed to change daily.

When he was admitted to the hospital May 5, his primary problems were fever and vomiting. But by the next day, his abdominal pain worsened.

He had developed what's called peritonitis, an inflammation of the membrane lining the abdominal wall, Freij said. Imaging tests also revealed that Levi had inflammation of the small intestine.

Then, his lungs filled with fluid. He developed pneumonia, and needed supplemental oxygen to breathe. He was moved to the intensive care unit.

"His blood pressure started dropping," Freij said, "and he had not only pneumonia, but he had heart dysfunction. ... And he developed extensive lung disease."

Peck described the ordeal as "scary."

"It just was one thing after another," said Peck, who is a dental hygienist. She's been off work for months because the governor's executive order required all dentists in the state to temporarily shut down their practices during the height of the pandemic.

"Every day was something new, and I didn't know what was going to happen," Peck said. "Thank God that ... I took him (to the hospital) when I did because if I would have waited any longer or if the doctor would have said, 'Oh, it's just a stomach bug. Go home,' I don't know where we would be right now.

"It could have gotten much worse if it didn't play out the way it did."

Levi was swabbed three times to test him for coronavirus. All three times, the test came back negative. But an antibody blood test showed the first-grader at West Utica Elementary had antibodies in his blood to the virus. That means he likely contracted coronavirus, but was asymptomatic until this cascade of inflammatory problems struck.

That was surprising to Peck.

"'He hasn't really gone anywhere," she said. "He goes outside, but it's just me and him. He doesn't play with anybody or do anything with anyone. When we go to the grocery store, we do the Kroger pickup. We don't go inside. ... We haven't been around anybody, so not really sure when or how any of us could have even picked it up."

And that's something everyone needs to keep in mind, Kimberlin said, as states begin to reopen. The virus is circulating in communities and all of us are vulnerable.

"Every American should do their part to keep it from spreading," he said, "That includes social distancing. It includes density reduction, which right now is less than 10 people. That number may change, but the principle of not being around large groups is going to stay with us for months if not years.

"It includes wearing a mask when you're not in your car or not in your home or your immediate personal work space. Always wear a mask. It includes hand hygiene, washing your hands very frequently and thoroughly, ... and being mindful of surfaces where droplets that could have the virus hitch a ride ... to your face."

Freij said as coronavirus continues to spread through the country, there undoubtedly will be more cases of children sickened by this syndrome.

But in a country of 330 million people, even if only 1 in 10,000 children who contract COVID-19 go on to develop MIS-C, "the numbers will look big," Freij said. "But relative to the population, it's a low attack rate, an uncommon event."

Kimberlin agreed.

"This is still very rare," he said. "Parents are understandably scared about this. They're scared about so much, as we all are with the pandemic. ... But this is something that is highly highly unlikely to impact any given child and we need to learn a whole lot more about it.

"We're obviously taking it very seriously, but parents should not add this to the list of yet one more thing that they need to be worried about.

"Many of these children get better really quite quickly given how sick they are when they're coming into the hospital."

That's what happened to Levi.

After nearly a week in the hospital, he was able to go home again to finish his recovery.

He's back to Zoom calls with his classmates and teacher, playing video games and outside, too.

And though there are still follow-up appointments and tests in Levi's future to ensure there are no complications, he's likely to make a full recovery, Freij said.

Peck said her advice to parents is this: "If your child is sick, get them in. Get them checked out."

Contact Kristen Shamus: 313-222-5997 or kshamus@freepress.com. Follow her on Twitter @kristenshamus.

Michigan Radio, Bridge Magazine, and The Detroit Free Press are teaming up to report on Michigan hospitals during the coronavirus pandemic. We will be sharing accounts of the challenges doctors, nurses and other hospital personnel face as they work to treat patients and save lives. If you work in a Michigan hospital, we would love to hear from you. You can contact reporters Robin Erb rerb@bridgemi.com at Bridge, Kristen Jordan Shamus kshamus@freepress.com at the Free Press and Kate Wells katwells@umich.edu at Michigan Radio.

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