SALT-MEERSTAD – The number of patients diagnosed in the Primary Children’s Hospital with a coronavirus-related complication has doubled in 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 is infected with SARS-CoV-2.
As medical experts try to unravel the long-term effects of COVID-19, Primary Children’s Hospital officials announced Tuesday that they will begin the first term study of MIS-C.
The long-term outcomes after the multisystem inflammatory syndrome in children, called the MUSIC study, will try to answer how MIS-C affects children who are diagnosed five years after they develop it.
The massive project will include work from more than thirty children’s hospitals across the US and Canada. It is funded by the National Heart, Lung and Blood Institute, says Dr. Ngan Truong, a cardiologist at the University of Utah Health and Intermountain Primary Children’s Hospital, 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 stage, and we continue to care for them after their hospitalization.”
The initial consequences of MIS-C
In October, 12-year-old Madilyn Dayton of Cokeville, Wyoming, woke up and found herself in excruciating pain. She could not move much and ended up in the Primary Children’s Hospital, where she was quickly diagnosed with MIS-C.
Her family had no idea that she was even exposed to COVID-19, as no one in the eight-person household showed symptoms or tested positive for them. What started as flu-like 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 was “doing much better now.”
“I’m still getting very tired, but otherwise everything’s almost normal again, ‘she said, joining the announcement of the study through a video chat with her mother.
Marilyn Dayton said she has kept Madilyn out of school since her diagnosis as a precautionary measure because of her chronic fatigue. Madilyn was once an active child who participated in many sports and shot a basketball after five minutes.
“We noticed the part of the fatigue,” Marilyn Dayton said. “I don’t know if she could get up and do a full school day and still handle everything. She still sleeps a lot.”
There are still many unknowns about MIS-C, and eventually Madilyn will participate in the new long-term study. The complication after the coronavirus results in all sorts of different reactions, and it is unclear how long it will take.
Truong explained that MIS-C is a rare complication of COVID-19 infection that is thought to be due to an ‘extreme immune response’ to SARS-CoV-2. It mostly 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 diseases of multiple organ systems, such as the heart, lungs, blood, kidneys or brain. Children who develop MIS-C are often admitted to the hospital and need intensive care due to low blood pressure, shock or heart problems.
The total number of children admitted to the Primary Children’s Hospital with MiS-C since the pandemic is about 50, but the number is increasing, Truong said. The hospital has reported about 30 new cases since mid-November. The increase in MiS-C cases appears to follow similar patterns over an increase in coronavirus-related pediatric hospitals in Utah, which was pointed out in a study from the University of Minnesota.
The Centers for Disease Control & Prevention has reported 1,626 cases of MIS-C nationwide since April 2020. There were also 26 deaths reported from children who experienced symptoms that met the definition of the syndrome.
Since the COVID-19 vaccine has not yet been approved for children, experts say that the only thing that delays MIS-C is protective measures to control the spread of the coronavirus.
Data also show that an excessive number of blacks and Latinos were affected, Truong added. After all, there are not many answers when it comes to understanding the syndrome, such as why some children end up with it.
“MIS-C has so far been largely a mystery,” she said. “We do not yet know what risk factors cause some children with COVID-19 infection to develop MIS-C and others.”
These unknowns also include if it can lead to serious long-term effects such as scarring in the heart, which can lead to serious heart issues and possibly death. The unknown at heart is one of the reasons why some pediatricians may recommend recovery for three to six months before doing physical exercise like doing sports.
Find 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. This – along with concentration problems – emerged as a longer side effect of COVID-19 in adults, Truong said.
The researchers will also reflect on the long-term effects on the nervous system, lungs, immune system and gastrointestinal systems. This will be done by reviewing data on hospitalization and follow-up appointments, as well as annual telephone interviews with participants to go into their symptoms over time.
Many hospitals have already followed up to six months to visit MIS-C patients, so the study will review the results collected from participating hospitals.
“We will also look for genetic clues about the risk and outcome of diseases,” Truong said. “We will use this information to develop 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 they do such studies and find participants to participate in, they can not get the answers.
– Marilyn Dayton
For Truong, she finds the study relevant to the families of children diagnosed with MIS-C. She said she regularly receives questions from parents who want to know if the symptoms their children are having at that time will continue in the future – and for how long.
These are questions she has not yet had answers to.
“Unfortunately, at the moment I do not have a clear answer for them, 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 parents and my patients,” she said. said. “We hope the data from the MUSIC study will help guide us and provide long-term follow-up strategies for children and young adults, for example if we need to limit it.”
Marilyn Dayton is one of the parents who asked about the future of her child. While she and Madilyn wish they had the answers now, they took the opportunity to participate in the study.
This is something they said they never really questioned or doubted.
“I wanted answers,” Marilyn Dayton said. “Unless they do such studies and find that participants participate in them, they cannot get the answers.”
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