SALT LAKE CITY – The number of patients at the Children’s Primary Hospital diagnosed with a coronavirus-related complication has doubled over the past two months.
In fact, there are now over 1,500 confirmed cases of multisystem inflammatory syndrome in children, otherwise known as MIS-C. The syndrome develops after the child has been infected with SARS-CoV-2.
As medical experts try to reveal the long-term effects of COVID-19, officials at the children’s primary hospital announced Tuesday that they will begin the first-term study of MIS-C.
The long-term results of multisystem inflammatory syndrome in children, called the MUSIC Study, will seek to respond to how MIS-C affects children who were diagnosed five years after they developed it.
The massive project will include work from more than 30 children’s hospitals in the US and Canada. It’s funded by the National Heart, Lung and Blood Institute, said Dr. Ngan Truong, a pediatric cardiologist for Children’s and Health Hospital and Intermountain Primary University in Utah, and co-leader of the study.
“The MUSIC study is coming at an important time,” she said. “My colleagues at Intermountain Primary Children’s Hospital and I have treated dozens of young patients with MIS-C at this time and continue to care for them after they are hospitalized.”
Initial impacts of MIS-C
In October, 12-year-old Madilyn Dayton of Cokeville, Wyoming, woke up feeling immense pain. She could not move much and arrived at the Children’s Primary Hospital, where she was soon diagnosed with MIS-C.
Her family had no idea she had been exposed to COVID-19 because no one in the eight-person household showed symptoms or tested positive. What started as flu-like symptoms quickly turned into something much worse.
Madilyn and her mother, Marilyn Dayton, shared their story late last year. A few months later, Madilyn said she was doing much better now.
“I’m still getting tired very easily, but other than that, everything is back to normal,” she said, joining the announcement of the study via video chat with her mother.
Marilyn Dayton said she kept Madilyn out of personal school since her diagnosis as a precaution and because of chronic fatigue. Once an active child who participated in many sports, Madilyn was defeated after five minutes by shooting a basketball.
“I noticed the tired side,” Marilyn Dayton said. “I don’t know if he could get up and do a full day of school and do well. He’s still sleeping a lot.”
There are still many unknowns about MIS-C, which is why Madilyn will participate in the new long-term study. The post-coronavirus complication results in all sorts of different reactions and it is not clear how long they last.
Truong explained that MIS-C is a rare complication of COVID-19 infection that is thought to be the result of an “extreme immune response” to SARS-CoV-2. It mainly affects school-age children, but has also been reported in infants and young adults. Symptoms include fever, abdominal pain, diarrhea, red eyes, rash and fatigue.
It can lead to serious diseases of many organ systems, such as the heart, lungs, blood, kidneys or brain. Children who develop MIS-C are often hospitalized and require intensive care due to low blood pressure, shock or heart problems.
The total number of children hospitalized at the primary hospital for children with MiS-C since the pandemic began is about 50, but the number is growing, Truong said. The hospital has reported about 30 new cases since mid-November. The increase in MiS-C cases appears to follow similar patterns in the increase in coronavirus-related hospitalizations for children in Utah, a study from the University of Minnesota pointed out.
The Centers for Disease Control and Prevention reported 1,626 cases of MIS-C nationwide as of April 2020. It also reported 26 deaths of children who showed symptoms that met the definition of its syndrome.
Because the COVID-19 vaccine has not yet been approved for children, experts say the only thing that slows down MIS-C is protective measures to combat the spread of coronavirus.
The data also shows that a disproportionate number of blacks and Latinos have been affected, Truong added. However, there are not many answers when it comes to understanding the syndrome, such as why some children get it.
“MIS-C is largely a mystery up to this point,” she said. “We do not yet know what risk factors are causing some children with COVID-19 infection to develop MIS-C and others not.”
These unknowns also include whether they could lead to serious long-term effects, such as heart scarring, which can lead to serious heart problems and possibly even death. The unknowns in the heart are one of the reasons why some pediatricians may recommend recovery three to six months before physical activity, such as playing sports.
Looking for answers to long-term effects
Possible long-term effects go beyond the heart. The study could determine how long Madilyn’s documented chronic fatigue will last. It – along with difficulty concentrating – appeared to be a longer side effect of COVID-19 in adults, Truong said.
Researchers will also delve into the long-term effects on the nervous system, lungs, immune system and gastrointestinal system. This will be done by reviewing hospitalization and follow-up dates, as well as annual telephone interviews with participants to check for their symptoms over time.
Many hospitals were already monitoring up to six months to check in patients with MIS-C, so the study will look at the results that were collected from participating hospitals.
“We will also look for genetic clues about disease risk and outcomes,” Truong said. We will use this information to create evidence-based treatment guidelines for MIS-C that will help pediatricians better identify and respond to children with MIS-C symptoms.
I wanted answers … Unless I do such studies and find participants to participate in it, I can’t get those answers.
– Marilyn Dayton
For Truong, she believes the study is relevant to the families of children diagnosed with MIS-C. She said she often receives questions from parents who want to know if their children’s symptoms at that time will persist in the future – and for how long.
These are unanswered questions.
“Unfortunately, I don’t have a clear answer for them at the moment, and the data we have is very limited at the moment. However, I hope that in the coming years we will have more answers for my parents and my patients,” she said. “We hope that the data from the MUSIC study will help us provide guidance and strategies for long-term follow-up for children and young adults, such as whether we should restrict them through activity.”
Marilyn Dayton is one of the parents who asked about her child’s future. While she and Madilyn want to have the answers now, they jumped at the chance to participate in the study.
It’s something they said they never questioned or had doubts about.
“I wanted answers,” said Marilyn Dayton. “If I don’t do studies like this and I can’t find participants to participate in it, I can’t get these answers.”
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