SALT LAKE CITY – The number of primary pediatric hospital patients with coronovirus-related complications has more than doubled in the past two months.
In fact, there are now more than 1,500 confirmed cases of multisystem inflammatory syndrome in children, known as MIS-C. The syndrome develops after the child is infected with SARS-CoV-2.
As medical experts try to uncover the long-term effects of COVID-19, officials at the Primary Children’s Hospital announced on Tuesday that they would begin the first study of MIS-C.
The long-term outcome after the Multisystem Inflammatory Syndrome in Children, known as the Music Study, will seek to answer how MIS-C affects children who were diagnosed five years after developing it.
The massive project will involve the work of more than 30 children’s hospitals in the US and Canada. It is funded by the National Heart, Lung, and Blood Institute, pediatrician for Utah Health and Intermountain Elementary Children’s Hospital and co-leader of the study, Dr. Ngan Truong said.
“Music study comes at an important time,” she said. “My colleagues and I at Intermountain Primary Children’s Hospital have treated dozens of young patients with MIS-C at this point, and we continue to care for them even after their hospitalization.”
Initial effects of MIS-C
Back in October, Madeline Dayton, 12, of Cokingville, Wyoming found herself in immense agony. She could not walk much and ended up in Primary Children’s Hospital, where she was soon diagnosed with MIS-C.
His family did not know that he was also exposed to COVID-19 because no one in the eight-person home showed symptoms or tested positive for it. What started as a flu-like symptom led to some of the more serious infections.
Madilyn and her mother, Merlin Dayton, shared their story late last year. A few months later, Madeline said she was “doing very well now.”
“I still get tired very easily, but apart from that everything is almost back to normal,” she said, joining the study announcement via video chat with her mother.
Marilyn Dayton said she kept Madeline out of school as a precaution and because of her chronic fatigue. Once an active kid who competed in several sports, Madeline was given a five-minute airing after shooting a basketball.
“We’ve paid attention to the fatigue part,” Merlin Dayton said. “I don’t know if she can get up and do a full day of school and yet handle everything. She still sleeps a lot.”
There are still many unknowns about MIS-C, which is why Madeline will participate in the new long-term study. Coronovirus complication is followed by all types of 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 mostly affects school 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 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.
Truong said the total number of children in primary children’s hospital with the MiS-C since the epidemic is about 50, but the number is increasing. The hospital has reported 30 new cases since mid-November. The increase in MiS-C cases appears to follow a similar pattern regarding the increase in coronovirus-related child hospitalization in Utah, reported in a University of Minnesota study.
The Centers for Disease Control and Prevention reported 1,626 cases of MIS-C nationwide since April 2020. It also reported the deaths of 26 children whose symptoms were experienced.
Since the COVID-19 vaccine has not yet been approved for children, experts say there are protective measures to combat the spread of coronovirus only to slow MIS-C.
The data also show that Black and Latino had a disproportionate effect, Truong added. Nevertheless, there are not many answers to understanding the syndrome, such as why some children end up with it.
“MIS-C is largely a mystery at this point,” she said. “We do not yet know if some of the risk factors that cause some children with COVID-19 infection develop MIS-C and others do not.”
These unknowns also include whether it can cause serious long-term effects such as heart burn, which can lead to serious heart issues and possibly death. There is a reason unknown to the heart that some pediatricians may recommend a recovery of three to six months before physical activity such as playing sports.
Seeking answers to long term effects
Possible long-term effects go beyond the heart. The study can determine how long Madeline’s documented chronic fatigue will last. It – with difficulty concentrating – has emerged as a long-term side effect of COVID-19 in adults, Truong said.
Researchers will also dive into reviewing long-term effects on the nervous system, lungs, immune system and gastrointestinal systems. This will be conducted through hospitalization and appointment appointment data as well as an annual phone interview to participants to check their symptoms as time passes.
Many hospitals were already undergoing follow-up for six months to check in with MIS-C patients, so the results collected from the hospitals participating in the study will be reviewed.
“We will explore genetic clues about the risks and consequences of the disease,” 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 … they can’t get those answers until they study in this way and the participants get to participate in it.
– Marilyn Dayton
For Truong, she makes the study relevant to the families of children diagnosed with MIS-C. She said she often asks questions to parents who want to know if their children will continue to have symptoms at the time – and for how long.
Those are questions for which he does not have answers.
“Unfortunately, I don’t have a clear answer for them at this point, and the data we have right now is very limited. However, I hope we have more for parents and my patients in the coming years There will be answers., “She said. “We hope that the data from music studies will help us provide guidance and long-term follow-up strategies for children and young adults, such as if we need them to be activity-restricted.”
Merlin Dayton is one of the parents who asked about their child’s future. While he and Madilyn wished they had answers now, they jumped at the opportunity to participate in the study.
This is something that he said he never actually questioned or suspected.
“I wanted an answer,” said Merlin Dayton. “Unless they study in this way and find participants to participate in it, they cannot obtain those answers.”
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