Everything We Know So Far About Multisystem Inflammatory Syndrome (MIS-C)

by Elaine Roth
Originally Published: 
Girl sitting on hospital bed
Scary Mommy and C. Lyttle/Getty

What I remember most from the day the World Health Organization (WHO) declared a global pandemic, was the fear—for myself, for my family, for the way the world would look when normal became a thing of the past.

But that fear did not extend to my children. With respect to their health and their safety, I could breathe easy because initial reports suggested that kids didn’t get sick, or at least not as sick as adults. Kids weren’t dying from the novel coronavirus. Kids were, for reasons we still don’t understand, largely spared from the worst of this disease that has completely shut down life as we once knew it.

Then, in early April, reports began to emerge that threatened that deep breath. Most kids weren’t getting sick or dying from an initial infection with COVID-19, but children were beginning to arrive in hospitals with a strange inflammatory illness. The majority of those children tested positive for COVID-19, or tested positive for antibodies to COVID-19, suggesting a prior infection.

Suddenly, children weren’t as safe as we’d thought. And suddenly, the one saving grace of this pandemic—that children were spared—was ripped away. As of May 12, 14 states have reported cases of the mysterious illness, and New York has seen three deaths.

It’s a tragedy and terrifying, but knowledge and information are power, and understanding the inflammatory illness, now known as Multisystem Inflammatory Syndrome in Children (MIS-C), affecting children is important. Parents should know what to look for, understand how it’s treated, and also, know it’s okay to take that deep breath—because there are some reasons not to panic.

What Exactly Is Multisystem Inflammatory Syndrome in Children?

An inflammatory syndrome is a body’s overreaction to a viral infection. According to the CDC, MIS-C is a condition in children in which “different body parts become inflamed, including the heart, lungs, kidneys, brain, skin, eyes, or gastrointestinal organs.”

Doctors strongly suspect that MISC-C is related to the novel coronavirus. In New York, most of the children who’ve gotten sick tested positive for active COVID-19 infections or had antibodies, suggesting they’d had the virus at some point.

What Causes MISC-C?

We don’t know for sure. An inflammatory syndrome can occur when the immune system becomes overactive in response to an infection. Doctors at New York-Presbyterian suspect that in some cases, as children’s bodies are learning to become immune to the virus, their immune systems are over-activating, not unlike the cytokine storms affecting adults.

Why some children’s immune systems go into overdrive is one of the main mysteries medical professionals are racing to answer.

What Are The Symptoms of MISC-C?

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MISC-C is still relatively new and doctors are learning more about the syndrome every day. As of now, the main symptoms of MISC-C seem to be a fever of over 101 degrees that lasts for a few days, severe abdominal pain, and a widespread red rash that turns white when you touch it. Kids with this syndrome are typically lethargic.

The syndrome has been compared to Kawasaki disease, which usually affects kids under five and causes blood vessels to become inflamed. But despite sharing features with this disease, most doctors now agree that MISC-C is its own syndrome.

In May, the New York Times reported the story of Jack McMorrow, a teenager who was affected by MISC-C. His symptoms started with a rash, and within two weeks, he was hospitalized for heart failure. McMorrow described the pain he felt throughout his body like this: “You could feel it going through your veins and it was almost like someone injected you with straight-up fire.”

What Are The Treatments for MISC-C?

According to Dr. Steven Kernie, chief of pediatric critical care medicine at NewYork-Presbyterian Morgan Stanley Children’s Hospital, the treatment for MISC-C depends on the severity of the disease. In some instances, the child needs supportive care for symptoms because the body will tone down the immune response on its own. In the case of severe illness, children need treatment, which could involve immunosuppression and other medications to suppress an overactive immune system.

Should I Panic?

As a self-described panicker, I can personally attest to the fact that blind panic has never once worked for me. I suspect being armed with information and then making careful decisions for myself and my children versus panicking into the void is always a better choice, but that’s just my personal opinion.

However, we all have to weigh the risks with something like this. And while I would never recommend full-on panicking, being vigilant and informed is definitely recommended.

Two, with respect to MISC-C, there are actual reasons not to panic from the experts. Most important to note is that this syndrome is rare, as of now. While exact numbers aren’t available, it’s assumed that hundreds of thousands of children around the United States were infected with COVID-19 and the vast majority will only have mild symptoms, and will not develop MISC-C.

At the same time, keep in mind that most of the population has been on lockdown as COVID-19 has spread, so we don’t know how many children would be sick with MISC-C if even more had been infected with coronavirus. Additionally, it takes several weeks for symptoms of MISC-C to appear after infection, so we may not know the magnitude of this syndrome for another few weeks or months.

Another reason not to panic: MISC-C is serious and dangerous, but in many cases it’s treatable, especially if caught early enough. Obviously no parent wants to see their children in the pediatric intensive care unit, suffering from heart failure or any life threatening issue, but there is a small comfort in knowing that modern medicine can usually save the day.

It’s also somewhat comforting (or maybe that’s just me grasping for straws) to know that MISC-C is not always a middle-of-the-night, one minute things are fine and the next they’re not, kind of emergency. MISC-C generally develops over time and will be easy for parents to spot—and seek out the appropriate medical care, if parents stay informed and aware.

That said, in some children, the syndrome can progress quickly from initial symptoms.

“What we are learning is that some of these children are getting very ill rapidly,” Dr. Jackie Szmuszkovicz, pediatric cardiologist at Children’s Hospital of Los Angeles, tells the Los Angeles Times. “I want to encourage parents that if they are concerned about their child they contact their pediatrician and not delay care.”

Yes: it’s super important your child be seen immediately if you suspect they have MISC-C.

The medical community still has a lot left to learn about MISC-C. As with COVID-19, the whys and hows and whos remain mysteries that we all want answered. Until then, doctors are learning more every day, and all we can do as parents is to stay informed, stay vigilant, and try, as best we can, not to panic.

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