SALT LAKE CITY: The number of patients in the Primary Children’s Hospital diagnosed with coronavirus-related complication has doubled over the past two months.
In fact, there are now more than 1,500 confirmed cases of multisystem inflammatory syndrome in children, also known as MIS-C. The syndrome develops after the child has been infected with SARS-CoV-2.
As medical experts try to unravel the long-term effects of COVID-19, officials at Children’s Primary Hospital announced Tuesday that they will begin the first-term study of MIS-C.
Long-term outcomes after multisystem inflammatory syndrome in children, known as the MUSIC study, will attempt to answer how MIS-C affects children who were diagnosed five years after developing it.
The large project will include work from more than 30 pediatric hospitals in the United States and Canada. It is funded by the National Heart, Lung and Blood Institute, said Dr. Ngan Truong, a pediatric cardiologist at the University of Utah Health and Intermountain Primary Children’s Hospital, and co-director of the study.
“The MUSIC studio comes at an important time,” he said. “My colleagues and I at Intermountain Primary Children’s Hospital have treated dozens of young patients with MIS-C at this time and continue to care for them after they are hospitalized.”
The initial impacts of MIS-C
In October, 12-year-old Madilyn Dayton of Cokeville, Wyoming, woke up to immense pain. He could not move much and ended up in the Children’s Primary Hospital, where he was soon diagnosed with MIS-C.
Her family had no idea she had even been exposed to COVID-19, as no one in the eight-person household had shown symptoms or tested positive. What started out as flu symptoms quickly turned into something much more serious.
Madilyn and her mother, Marilyn Dayton, shared their story late last year. A few months later, Madilyn said she is “doing so much better now.”
“I still get tired very easily, but other than that everything has almost returned to normal,” she said, joining the studio ad via video chat along with her mother.
Marilyn Dayton said she has kept Madilyn out of face-to-face school since her diagnosis as a precaution and because of her chronic fatigue. Once an active child who participated in many sports, Madilyn was dethroned after five minutes shooting a basketball.
“We’ve noticed the fatigue part,” Marilyn Dayton said. “I don’t know if I could get up and do a full day of school and manage everything. I still sleep a lot.”
There are still many unknowns about MIS-C, which is why Madilyn will be participating in the new long-term study. The post-coronavirus complication results in all sorts of different reactions and it is unclear how long they last.
Truong explained that MIS-C is a rare complication of COVID-19 infection that is believed 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 cause serious illness in multiple organ systems, such as the heart, lungs, blood, kidneys, or brain. Children who develop MIS-C are usually hospitalized and need intensive care due to low blood pressure, shock, or heart problems.
The total number of children hospitalized at the Primary Children’s Hospital with MiS-C since the pandemic began is about 50, but the number is growing, Truong said. Since mid-November, the hospital has reported about 30 new cases. The increase in MiS-C cases appears to follow similar patterns on an increase in coronavirus-related pediatric hospitalizations in Utah, which was noted in a University of Minnesota study.
The Centers for Disease Control and Prevention reported 1,626 cases of MIS-C nationwide as of April 2020. They also reported 26 deaths of children who had experienced symptoms that met their definition of syndrome.
Since the COVID-19 vaccine has not yet been approved for children, experts say the only thing that can stop MIS-C are protective measures to combat the spread of coronavirus.
The data also shows a disproportionate number of blacks and Latinos who were affected, Truong added. However, there are not many answers when it comes to understanding the syndrome, such as why some children end up with it.
“MIS-C is largely a mystery up to this point,” he said. “We still don’t know what risk factors cause some children with COVID-19 infection to develop MIS-C and others not.”
These unknowns also include whether it could cause serious long-term effects, such as heart scarring, which can lead to serious heart problems and possibly even death. The unknowns of the heart are one of the reasons why some pediatricians may advise recovery three to six months before doing physical activity such as playing sports.
Looking for answers to long term effects
The possible long-term effects go beyond the heart. The study could determine how long Madilyn’s documented chronic fatigue will last. – Along with difficulty concentrating – has appeared as a longer side effect of COVID-19 in adults, Truong said.
Researchers will also delve into the review of long-term effects on the nervous system, lungs, immune system and gastrointestinal systems. This will be done by reviewing hospitalization and appointment tracking data, as well as annual telephone interviews with participants to check for symptoms over time.
Many hospitals were already monitoring up to six months to register with patients with MIS-C, so the study will review the results that were collected from participating hospitals.
“We will also look for genetic clues about the risk and outcomes of the disease,” Truong said. “We will use this information to create evidence-based treatment guidelines for MIS-C that help pediatricians better identify and respond to children with MIS-C symptoms.”
I wanted answers … Unless they do studies like this and find participants to participate in, they won’t be able to get those answers.
– Marilyn Dayton
For Truong, he believes the study is relevant to families of children diagnosed with MIS-C. He said he often gets questions from parents who want to know if the symptoms their children are having at that time will persist in the future and for how long.
These are questions to which he has had no answers.
“Unfortunately, I do not have a clear answer for them at the moment and the data we have is very limited right now. However, I hope that in the coming years we will have more answers for parents and for my patients,” she said. to say. “We hope the data from the MUSIC study will help us provide guidance and long-term follow-up strategies for children and young adults, such as whether we should restrict them.”
Marilyn Dayton is one of the parents who asked about her son’s future. Although she and Madilyn wish to have the answers now, they missed the opportunity to participate in the study.
It’s something they said they never questioned or had doubts about.
“I wanted answers,” Marilyn Dayton said. “Unless they do studies like this and find participants to participate in, they can’t get those answers.”
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