The Diagnosis: Multisystem Inflammatory Syndrome in Children

Christmas with MIS-C

I never would have dreamt that my six-year-old daughter’s fever and vomiting would land her into a five-day stay at the Boise Children’s Hospital during Christmas. 

At first, I wasn’t overly concerned with my daughter’s symptoms. We already had COVID-19 a month prior, so whatever she had must be just a bug.

I was so wrong.

After a six-hour ER visit with an IV for fluids, ultrasounds, heart x-rays and the works, my daughter and I were taken by ambulance to the nearest Children’s Hospital. 

The Symptoms of MIS-C

One of the first questions the doctor at the Children’s Hospital asked was if Selah has had COVID. 

“We all had it in the middle of November,” I told her.

I tested positive for COVID-19, but the rest of my family didn’t get tested. Selah was barely sick then. She only had a fever for a couple of hours and that was about it. Meanwhile, I had it bad, I felt like I had been hit by a freight train.

The doctor told us that in rare cases, 4-6 weeks after having Covid, some children become very sick with fever, vomiting, rashes and an inflammatory response in their organs.

The timeline and symptoms added up. Selah was diagnosed with MIS-C (Multisystem Inflammatory Syndrome in Children). 

Typically, children who contract COVID-19 experience mild symptoms, or no symptoms at all. However, a small portion of children who are infected with COVID-19 end up developing MIS-C, a life-threatening condition that can affect a child’s heart, lungs, kidneys, brain, skin, and other organs.  (intermountainhealthcare.org)

I had never heard of MIS-C. I just sat there in disbelief with no battery left in my phone to contact my husband. I was in shock.

If I’d known I’d be spending the night at the hospital, I would’ve packed a toothbrush, but all I had was a water bottle. I was so unprepared for this.

Feeling clueless, I had no idea what to expect with this diagnosis. We were about to embark on a whole new journey I never wished to be on.

I watched my daughter get poked and prodded countless times, she was put on oxygen, had fluid in her lungs, was given an infusion and was monitored every 15 minutes. 

My daughter’s experience with MIS-C hasn’t been sunshine and rainbows.  It’s felt more like a hailstorm on a hot summer day -so unexpected and yet so damaging.

It was downright scary trying to sleep on the uncomfortable hospital sofa bed while her monitor would ding because her heart rate wasn’t consistent. Nurses and doctors would rush in throughout the night to check vitals, do tests, and administer medication.

I’ve never been in the position of seeing my daughter this sick ever. Oh, I wish I could have taken her place. I felt utterly helpless. Yet, my six-year-old daughter was so strong and brave. 

Because of COVID-19 precautions, only one parent can come and visit at a time and no one else is allowed in. Thankfully, my mom came into town to take care of our son, so my husband and I could take turns being with Selah at all times.

We were like ships in the night, running on little sleep and big doses of emotional exhaustion. I longed to process everything that was going on with my husband. But it felt like we were in a baton race, only having time for a quick embrace before switching shifts.

Treatment for Multisystem inflammatory syndrome in children

All my plans for Christmas went flying out that hospital window. Christmas of 2020 will be one that I’ll never forget- spending the best holiday of the year in the hospital will hopefully never be repeated!

My sweet family of four weren’t allowed to be in the same room, but we made the best of it and took turns with our little girl. We made FaceTime calls to family and friends.  Videos were sent to Selah to cheer her up and wish her a Merry Christmas. Our friends brought us a delicious Christmas dinner that made our day feel more festive than eating the less-than-appetizing hospital meal. 

After a five-day stay in the Children’s Hospital, we were finally able to take our sweet girl home. Driving home felt like freedom. Tears welled up in my eyes as I recounted what we had just been through. I was so glad she was well enough to go home. We could celebrate Christmas together as a whole family, and our kids could actually be in the same room. When we arrived at home, Selah started opening some Christmas presents, but she was too exhausted and just fell asleep.

Reye’s Syndrome: The Risks That Come with MIS-C’s Treatment

Before we were discharged from the hospital, the doctor told us the risks our daughter will have with the medications they prescribed her.  We have to be super careful that Selah doesn’t get the flu or chickenpox. With the heart medication she is on, she is at risk of getting Reye’s Syndrome.

Reye’s (Reye) syndrome is a rare but serious condition that causes swelling in the liver and brain. Reye’s Syndrome most often affects children and teenagers recovering from a viral infection, most commonly the flu or chickenpox. (mayoclinic.org)

I had never heard of Reye’s Syndrome before (I’m so not a medical professional). It’s super rare, but can cause permanent physical and mental disabilities, and has a 30% fatality rate.

Gulp, that’s super comforting for a parent to hear. 

So, the doctor said the best way to keep Selah healthy and lessen her risks is to quarantine ourselves and wait three days before anything comes into our home while she is on her medication.

We took our doctors advise seriously, and made some big changes, since her prescription was for at least 6-8 weeks.  It’s not worth messing around with our daughter’s health.  Their hope is that Selah will feel back to normal within two months. 

Tough decisions had to be made. We decided to pull Selah out of public school, so she would not have added exposure.  Plus, we wanted her to have consistency in school for the rest of the year.  So now, I am a homeschooling mom which has been a big change, and a good one.  

My husband works from home only now, which is quite a shift from before. We are all home now 24/7, which has actually been really nice and challenging.

Right now we are over three weeks past her diagnosis, and she still isn’t herself yet.  We have people visit outside our window and when they bring gifts or groceries, we wait three days before any items can enter our home. 

Selah still has side effects from the steroids she was on.  She doesn’t look like herself, but she’ll get there. It’s a slow journey.

Rare and Unknown Disease

The Multisystem Inflammatory Syndrome in Children diagnosis has been a roller coaster ride in the hospital and at home. MIS-C is scary for a multitude of reasons, especially since this new disease is so new.  The unknowns of the disease are a hard pill to swallow. Doctors are scrambling to understand it, and they have no idea if there are lasting repercussions. 

Because MIS-C has only recently been identified, the medical community is still trying to understand what causes it, as well as why it appears to affect only children. […] Fortunately, it is also rare, and the vast majority of children affected by it survive. (yalemedicine.org)

No one will know if there are lasting ramifications from MIS-C for the next several years. I’m hopeful that she won’t get this again or have any other health issues from having this new disease.

MIS-C Symptoms are important to know

Now, I wanted to share our story not so that you feel sorry for us or to freak you out.  I wouldn’t wish this on anyone, but the more you know what to look for with your child, the quicker the diagnosis and recovery process will be. My hope is that I can help you know what to look for so if you are in the position we were in with your own child, you’ll know what to do.

Here are some important things you should know about MIS-C:

1. If your family has COVID, pay attention to your kids in the next 4-6 weeks.

It’s important to know the timeline for MIS-C, especially if your child has had COVID or has been exposed to someone who has tested positive.

MIS-C typically doesn’t show up for four to six weeks after first being infected with COVID-19. (intermountainhealthcare.org)

Honestly I was in disbelief that this was all from COVID, especially since she had such a mild COVID-19 case.  But after talking to so many specialty doctors, they said most of the kids with MIS-C had a very mild case of COVID-19 or didn’t even know they had it at all.

If I were you, I’d mark my calendar four to six weeks out, so you can start looking for any symptoms your children may have during that time period. 

2. MIS-C symptoms are all across the board.

The trouble with MIS-C is that it looks very different depending on each child.  Here are some symptoms to look for:

Patients with MIS-C usually present with persistent fever, abdominal pain, vomiting, diarrhea, skin rash, mucocutaneous lesions and, in severe cases, with hypotension and shock

[…]

Not all children will have the same signs and symptoms, and some children may have symptoms not listed here. (cdc.gov)

My daughter had a fever that wouldn’t go away, vomiting, and she had rashes that look like targets. MIS-C looks most similar to Kawasaki disease and that is how doctors have been determining how to treat it. The range of Multisystem Inflammatory Syndrome in Children cases vary, but the worse cases lean more towards Kawasaki-like symptoms.

If you’re like me, you probably have never heard of this rare disease.

Kawasaki disease causes swelling (inflammation) in the walls of medium-sized arteries throughout the body. It primarily affects children. The inflammation tends to affect the coronary arteries, which supply blood to the heart muscle. (mayoclinic.org)

Selah’s lips would change colors, her tongue looked like a strawberry and was dotted, and her eyes were red.  Those are all classic Kawasaki markers.

3. If MIS-C is misdiagnosed or isn’t treated quickly, it can cause permanent damage.

I first called my daughter’s pediatrician, but they didn’t have any openings for appointments. If you can’t get into your child’s pediatrician, go to the ER especially if your child is dehydrated.

If you think that your child has MIS-C, you should contact your child’s doctor or pediatrician immediately. […]

A child experiencing serious illness should not delay in getting care and should immediately seek attention from their nearest emergency room. (chla.org)

The ER is the place to go if you think your child may have MIS-C.  Urgent Care is not equipped to do much with kids.  Plus, my husband spoke with a local urgent care doctor, and they had never heard of MIS-C. I’m so glad we skipped the Urgent Care and had a quick diagnosis from the Children’s Hospital.

If you suspect your child might have any of the MIS-C Symptoms, talk to their medical provider and bring it up.  The sooner the diagnosis, the quicker the treatment, and the better likelihood of positive recovery.

MIS-C Has Given Us Perspective

I hope you don’t have a personal experience with MIS-C, like we have. It’s been a difficult journey, but there have been many hidden blessings within it.  MIS-C has forced us to slow down, figure out our priorities, and become closer as a family

We have had so much support, prayers, and have felt very loved through the whole process.  Even with a not-so-pleasant diagnosis, we can see some good in it.  It’s a matter of perspective. 

MIS-C has been a reset for us. 

A good reset. 

A hard reset.

It’s given me the chance to take a deep breath, love on my children, and to cherish their health.

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