- The Diagnosis: Multisystem Inflammatory Syndrome in Children
- Reye’s Syndrome: The Risks that come with MIS-C’s treatment
- Here are some important things you should know about MIS-C:
The Diagnosis: Multisystem Inflammatory Syndrome in Children
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 Children’s Hospital during Christmas.
At first, I wasn’t overly concerned. We already had COVID-19 a month prior, so whatever it was 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 Children’s Hospital.
The Symptoms of MIS-C
One of the first things the doctor at the Children’s Hospital asked me was if Selah has had COVID. We all had it in the middle of November. I was tested but the rest of my family wasn’t. Selah was barely sick then with a fever for a couple of hours and that was it. Me on the other hand, I was wiped and felt like I was hit by a freight train.
The timeline added up with my daughters MIS-C symptoms. 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. […]
“There’s this notion out there that kids can’t get really sick from COVID-19 and that’s just not true,” said Dr. Lake. “The scariest part is most kids we see with MIS-C are completely healthy with no pre-existing conditions.” MIS-C typically doesn’t show up for four to six weeks after first being infected with COVID-19. (intermountainhealthcare.org)
I had never heard of MIS-C, call it naive, but the news is depressing these days and I never heard of it. I just sat there in disbelief with no battery left in my phone to contact my husband. I was so unprepared for this.
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- it’s so unexpected and yet so damaging.
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.
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 daughter was so strong and brave.
Rare and Unknown Disease
And the hard and scary part about this new disease is that it’s so new. There are so many unknowns. 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. And while there is mounting evidence that it is linked to COVID-19, the relationship between the two is not yet known. What is clear is that MIS-C is a serious health issue that requires prompt medical attention. Fortunately, it is also rare, and the vast majority of children affected by it survive. (yalemedicine.org)
Christmas of 2020 will be one that I’ll never forget- spending the best holiday of the year in the hospital is pretty memorable! All my plans for Christmas went flying out that hospital window.
Because of COVID-19 precautions, only one parent can come and visit in the hospital at a time. Thankfully, my mom came into town to take care of my 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.
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. People sent Selah videos to cheer her up. Our friends brought us a delicious Christmas dinner that made our day feel more special than eating the less-than-appetizing hospital meal on Christmas day.
After a five-day stay in the hospital, we were finally able to take our sweet girl home in the evening the day after Christmas. We tried having our Christmas when we came home, but she was so exhausted she 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, because 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.
Signs and symptoms such as confusion, seizures and loss of consciousness require emergency treatment. Early diagnosis and treatment of Reye’s Syndrome can save a child’s life. (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 pretty much quarantine ourselves and wait three days before anything comes into our home while she is on her medicine.
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 in two months.
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 homeschooling mom which has been a big change.
My husband works from home only now, which is quite a shift from before. We are all home now 24/7, which has been actually really nice and somewhat 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, we wait three days before they 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.
I want to share our story not so that you feel sorry for us or to freak you out. 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.
I wouldn’t wish this on anyone, but the more you know about what to look for with your child, quicker the diagnosis and can recovery process will be.
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.
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 or didn’t even know they had COVID 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 and has many similarities to Kawasaki Disease.
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.
They have elevated laboratory markers of inflammation (e.g., CRP, ferritin), and in a majority of patients laboratory markers of damage to the heart (e.g., troponin; B-type natriuretic peptide (BNP) or proBNP).
Some patients develop myocarditis, cardiac dysfunction, and acute kidney injury.
Not all children will have the same signs and symptoms, and some children may have symptoms not listed here. MIS-C may begin weeks after a child is infected with SARS-CoV-2.
The child may have been infected from an asymptomatic contact and, in some cases, the child and their caregivers may not even know they had been infected. (cdc.gov)
My daughter’s case was more like Kawasaki’s. This is a rare disease that I had never heard of.
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)
Her lips would change colors, her tongue looked like a strawberry and was dotted, and her eyes were red. She had a milder case than many and honestly her case was rough, so I can only imagine how bad it could have been.
3. If MIS-C is misdiagnosed or isn’t treated quickly, it can cause permanent damage.
The ER is the place to go first if you think your child may have MIS-C. Urgent Care is not equipped to do much with kids. Plus, my husband spoke with an 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 think that your child has MIS-C, you should contact your child’s doctor or pediatrician immediately. Specialty hospitals like Children’s Hospital Los Angeles are sharing their findings with pediatricians in the community so that they know what to look for when screening patients. […]
The team is working continuously to develop and release timely information to pediatricians, including members of the Children’s Hospital Los Angeles Care Network Families with a child experiencing serious illness should not delay in getting care and should immediately seek attention from their nearest emergency room. (chla.org)
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 better likelihood of good recovery.
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 and have felt very loved through the whole process. Even with a bad 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.
Take a deep breath. Love on your children. Cherish your good health. And let go of anything that isn’t important to you.