By VIRGINIA JEFFRIES and PHOEBE PINDER
Cree’Shaina Towery’s 9-year-old daughter tested positive for Covid in late December after a relative who was staying with them for the holidays contracted the virus. Towery’s daughter was totally asymptomatic, so she was not initially concerned, she said.
“At that point, I will say I was completely naive,” Towery said in a phone interview. “The only thing that I had heard about Covid, the doom and gloom portion of it, seemed to be more so related to adults. So I was 100% unconcerned. She was fine. She wasn’t tired, or any of the Hallmark signs that would give somebody cause for concern.”
One month later, things took a drastic turn for the worse.
Towery’s daughter developed extreme fatigue, a stomachache and shivers so severe Towery said she feared her daughter was having a seizure.
Towery rushed her daughter to the hospital nearest to where the two live in Dallas, Tex. Towery said the doctors did not seem particularly concerned. Her daughter was given either Tylenol or Ibuprofen and sent home.
Days later, even worse
A couple days later, Towery said her daughter became even more ill. “She did have that fever that wouldn’t break, and she had extreme fatigue,” Towery said. “She threw up that morning — she literally woke up Wednesday morning screaming and crying in pain. Her stomach was hurting and just all of these different things…. She started complaining of neck pain, and she had a swollen lymph node on the left side of her neck.”
The most concerning point, Towery said, was that her daughter’s fever would not break with the usual treatments of Tylenol or Ibuprofen. “Any fever [my daughter] has ever had since infancy has always been broken with some over-the-counters,” Towery said. “And so that alarmed me that I was not able to get that fever down for her.”
Towery took her daughter to her primary care doctor, where they examined her and did some lab work. Towery said they were ultimately told the same thing they had been told at the hospital — that her daughter probably had some sort of viral infection, and that they should switch out Tylenol and Ibuprofen every few hours until the fever broke.
That was a Thursday, and they were told to come back on Monday if the symptoms had not improved.
On Friday, Towery said, her daughter was extremely lethargic. She was only awake for about 4 out of the day’s 24 hours.
“I just started to notice that like, she was kind of talking in her sleep,” Towery told ClearHealthCosts. “She was having these really lucid dreams… She would be talking about stuff that wasn’t there, and she wasn’t making any sense.” Towery said she took her daughter’s temperature, and was shocked to see that it was 105 degrees.
She came across a mysterious illness by chance
Towery was extremely lucky in one regard. A few months before her daughter’s illness, Towery said she had read a news article about a young boy who became extremely ill from MIS-C (Multisystem Inflammatory Syndrome in Children), a life-threatening condition that can develop in children after a Covid infection.
Towery said that that article had been in the back of her mind ever since her daughter’s symptoms started, but once her fever hit that terrifying high, it all clicked into place. She had previously dismissed the idea, because her daughter did not display some of what she had read to be MIS-C’s hallmark symptoms, such as a rash or red eyes.
When Towery saw her daughter’s high temperature that night, she immediately went to the computer and googled MIS-C. Her daughter had the classic “strawberry tongue” symptom seen in many patients. Towery called her mother, and they decided to take her daughter to a children’s medical center in Dallas.
“Part of me was hopeful that her primary care doctor and the hospital that I took her to the first time were right,” Towery said. “But then that mom side of me kicked in and was like, ‘You’ve been mother to this child for nine years. And you know that this is not like her.’”
At the hospital, Towery’s daughter was so severely dehydrated that it took several hours of IV fluids and forcing her to drink liquids — which she had been unable to keep down before — for her to produce a urine sample.
The doctor’s at the hospital asked if Towery had ever heard of MIS-C. “They were glad that I’d heard of it…that I at least had a little bit of prior knowledge about it,” Towery said.
“Because it can be scary as a parent, if you’re coming in blind, and you’ve never even heard of something and they’re telling you your child has it.”
Towery’s daughter remained in the hospital for five days. Fortunately, none of her organs appeared to have been severely damaged by the illness and now, after weeks of follow-up appointments and careful monitoring, Towery said her daughter is doing better.
“We’ve had some good days, we’ve had some bad days,” Towery said. “But ultimately, she seems to be making a full recovery. She has had her labs redone twice. And so far those have both come back as completely clear. So no inflammation markers are lingering around.
“She’s making a slow but steady return to herself. She is a little bit tired… She gets winded easily and, and she suffered a lot mentally. She cried a lot. I signed her up for some time with a child psychologist…. Ultimately, I think she’s on the right track to be, you know, back to herself or 100% soon.”
A spike in cases
Towery’s daughter is one of a growing number of children diagnosed with MIS-C in the U.S. Even though the condition is rare, public health officials are alarmed by a recent spike in cases. On Oct. 1, only 1,000 children had been diagnosed with MIS-C. By Feb. 1 that number had doubled to over 2,000, the Centers for Disease Control and Prevention said.
Worldwide, children are far less likely to contract Covid, and the fraction of Covid-positive children that go on to develop MIS-C is even smaller. The C.D.C. said there have been 2,617 cases of MIS-C reported since May of 2020 — about two months after the Covid pandemic took hold in the United States, and 33 children have died.
Doctors don’t know exactly how Covid causes MIS-C, or why it affects some children and not others.They believe it has something to do with the body’s immune response to the virus.
“It’s striking the way that the wave of MIS-C patients come in all at the same time after the wave of a COVID,” Dr. Dawn Wahezi, chief of pediatric rheumatology at The Montefiore Children’s Hospital and associate professor of pediatrics at Albert Einstein College of Medicine in the Bronx, N.Y. said in a phone interview. “That’s been pretty convincing to us — and that all the patients, for the most part, have antibodies to the virus — that it is the immune response to the virus that’s causing it.”
Wahezi is one of five physicians on staff at Montefiore’s dedicated MIS-C Program, where she and her colleagues have seen over forty children with MIS-C since April of 2020. Wahezi said that while patients can present with a spectrum of symptoms, there are some classic signs.
Asked if there are more cases of MIS-C now than before, Dr. Avindra Nath, a physician and neuroscientist at the National Institutes of Health who studies the coronavirus, said in a video interview “Because [Covid cases] are accumulating — the ones that occurred in the summer are still around, and then you’re getting new cases, and you’ve got millions and millions of people infected — cumulatively, the numbers [of MIS-C] are going to go up.”
“Parents are really driving the information sharing about MIS-C because it is so new,” said Sehreen Noor Ali, co-founder and co-CEO of Sleuth, a platform that securely collects and shares data on symptoms, diagnostic pathways and specialists between parents of children with similar health challenges.
She said a number of parents whose children have MIS-C are sharing their stories on Sleuth because they want others to avoid the same diagnostic delays they encountered.
“It can be something where you have a child who has a fever and abdominal pain and a rash to a child who has something that looks like Kawasaki [disease], where they have rash and conjunctivitis, and then to patients who present with more significant cardiac involvement, and they can have low blood pressure and shock,” Wahezi said. Kawasaki is a syndrome that causes fever, red eyes and blood vessel inflammation in young children. Serious cases can cause potentially lethal coronary artery aneurysms in the heart. “But certainly the ones who present with the Kawasaki-like picture, or those who present with the heart involvement, are what we’re seeing most commonly.”
Dr. Nadine Choueiter, a pediatric cardiology specialist and associate professor in pediatrics at the Albert Einstein College of Medicine Children’s Hospital at Montefiore, said in a phone interview that doctors were initially surprised by the level of cardiac involvement seen in children with the illness. “What’s interesting about these children,” Dr. Choueiter said, “is the incidence of heart or cardiac dysfunction or cardiac involvement is very high — anywhere between 70 to 90% — as opposed to adults, where COVID-19 was mostly a respiratory disease.”
Amazingly, Choueiter said that, of the more than 40 children seen at the hospital where she and Wahezi work, none of the patients have died, and most have gone on to make a full recovery. Choueiter emphasized that it would be important to monitor these children’s health for several months post-recovery to look for warning signs.
“I think it’s important to emphasize the need for long-term follow-up in order to understand the long-term implications of the disease,” Choueiter said. “Because it’s one thing to send a patient out of the hospital — you know, that’s great that we’re able to discharge them, and all of them have survived.
“Yet we want to make sure that they continue to have a good quality of life, and that we don’t have comorbidities later on, just because they were exposed to the virus.”
So far, Choueiter said, she has seen few serious long-term issues in her recovered patients.
Choueiter also noted that, the earlier patients are treated in their illness, the better the results are. Patients who are treated too late may be beyond help.
A rare condition that can turn fatal
That’s what happened to Carrie English’s daughter, Elizabeth, 12, who died from MIS-C in December, less than a week after she began first feeling ill.
“There are four things listed on her death certificate: the first one is pneumonia, the second one is heart failure, the third is MIS-C, and the last is Covid-19,” English said in a phone interview from her home in Payson, Ariz.
Like Towery, English said her daughter’s earliest symptoms were not serious at first.
“She had come home from school on Thursday and said that she wasn’t feeling quite well,” English said. “She had a slight fever, her stomach hurt, she didn’t have very much of an appetite.”
English treated her daughter at home with the vitamin C supplement Emergen-C and other vitamins, over-the-counter medications, crackers and Gatorade. But as the weekend went on, English said, it was clear none of these remedies were helping, and Elizabeth was getting worse.
When she took her daughter to the local urgent care center, the doctor told English that Elizabeth probably had Covid and that she could be safely monitored at home. He also made one observation that in hindsight became troubling.
“He said her heart rate is a little bit high but there’s not much we can do for her right now,” English said.
He also ordered a Covid test, but said it would take a couple of days to come back. Elizabeth was sent home with instructions to head to the emergency room if things got worse.
Frightening, fast changes
The next few hours and then days were a blur of frightening changes to Elizabeth’s condition and rapidly escalating symptoms, English said.
“Maybe a couple of hours after we got home from that urgent care visit, I made the decision to take her to the emergency room because she was then not holding down any food,” she said.
At the local emergency room, Elizabeth’s heart rate was extremely high and her fever was about 105 degrees. Doctors told Elizabeth’s parents they were not equipped to handle pediatric emergencies and transferred her by ambulance to Phoenix Children’s Hospital, a two-hour drive.
“By the time we got to [Phoenix Children’s], it was close to midnight,” English said. “We were in the emergency room for maybe 10 minutes, and they transferred us to the intensive care unit. And that’s where she stayed for the next two days before she passed away.”
No known exposure to Covid
Elizabeth English never tested positive for Covid while she was alive, but her autopsy concluded that she had antibodies to the virus. Her mother believes Elizabeth must have come down with an asymptomatic case of the virus in October or November, because she never seemed ill before getting MIS-C.
“I pretty much very well believe in my mother heart that she got it at school, probably from another child that was completely asymptomatic, you know, because the timeframes all fit in line very well,” English said.
Throughout the fall semester, English said Elizabeth’s school had periodic Covid outbreaks. Administrators responded by quarantining affected classrooms or temporarily closing the building.
Curiously, none of Elizabeth’s family members were ever sick with Covid.
“My husband, my son, and myself, who were all in the household with her. We all went and got antibody testing, and none of us had antibodies,” English said. “So she had Covid at some point in time in this house, and never passed it on to us.”
The fact that no one knew Elizabeth had previously been infected with Covid may have delayed her diagnosis and cost her her life.
“They kept asking, ‘Was she exposed to COVID? No,’ we did not know,” English said. “So they were looking for other things, which all take a matter of days to come back, because they’re all sent off. They’re just basically pumping her full of antibiotics, waiting, hoping that something will take, waiting for answers. And we just didn’t have that time.”
By the time Elizabeth’s doctors considered MIS-C and administered IVIG, or intravenous immune globulin — a drug doctors say is one of the most effective treatments for MIS-C — it was too late.
Three trips to the hospital and no one suspected MIS-C
Myra Alexandra Colmenero and her daughter, Paris, both had Covid in July of 2020. So when Paris, 9, came home from school with a low-grade fever of 99.4 degrees the Friday before Labor Day weekend, Colmenero’s first thought was that her daughter might have caught the virus again.
When Colmenero called her the pediatrician’s office in Springdale, Ark., the staff told her not to worry. But between Friday and Saturday, Paris’s condition became much worse. Her fever spiked, her eyes grew red, and she became too exhausted to even eat.
“She didn’t want to stay awake. When we were sitting at the dinner table, she just didn’t want to wake up,” Colmenero said in a phone interview. “I told her, ‘Your food is here if you want it, it’s ready. Are you going to eat it?’”
Colmenero was alarmed enough to take her daughter to the emergency room. After running a few tests, they sent her home.
“They said it was too soon for her to catch [Covid] again,” Colmenero said. “They were like ‘I think it’s a stomach bug.’”
Worse and worse
But after returning home, Paris’s symptoms grew in number and severity. She began having diarrhea, vomiting and breathing trouble.
“We started noticing her breathing was super hard. Like she was breathing when she was resting as if she was running,” Colmenero said.
When Colmenero took Paris back to the emergency room, doctors ran tests — including a Covid test — and sent the family home when the results were normal.
“I felt like I was walking out of there with no answers and that she wasn’t going to get any better,” Colmenero said.
Later that night, Colmenero still knew something wasn’t right.
“So that night at like 10:30 or 11 p.m., she was telling me ‘Mommy, my tummy’s hurting too much.’ So I Googled, pretty much everything.”
Colmenero decided to take her daughter to the emergency room at a different hospital — their third trip in less than two days. There, the doctors would finally realize that Paris was seriously ill, but had no idea it was MIS-C. This resulted in a series of misdiagnoses, delaying treatment for Paris and causing her family stress and anxiety that continues more than six months later.
“They couldn’t do an IV on Paris because she was so dehydrated,” Colmenero said.
After reviewing her symptoms, emergency room physicians sensed that Paris’s illness was Covid-related. They sent her to the hospital’s Covid ward and continued to run tests.
A traumatic misdiagnosis
Colmenero spent the whole night at her daughter’s bedside. Then, around 5 o’clock in the morning, a doctor came into Paris’s room with a diagnosis — an incorrect diagnosis — that would change Colmenero’s life.
“They diagnosed her with a fatty liver, inflamed gallbladder with lymphoma, cancer,” Colmenero. “I asked the doctor, ‘I’m sorry, what’s lymphoma?’ and she gave me a smirk and kind of laughed and said ‘cancer.’ I was like, ‘cancer? She’s so young.’”
“I have never suffered from anxiety or panic attacks before,” she said. “And that moment, my life broke. You know? I didn’t know what to think.”
A nurse took Colmenero aside and told her to get a team of doctors ready for treatment, telling her the sooner Paris began treatment, the higher her chances of survival would be. The family went home tormented with worry and made plans to speak to Paris’s pediatrician as soon as the office opened.
‘I walked in circles in my living room’
“I didn’t sleep,” Colmenero said. “I walked in circles in my living room for three hours waiting for the clinic to open.”
By Tuesday, later testing revealed that Paris did not have cancer, but Colmenero still had no idea what was wrong with her daughter and no treatment plan. And she continued getting sicker.
Her stomach pain and diarrhea grew more intense and more frequent, and her labored breathing returned. But Colmenero didn’t know what to do. After being dismissed by doctors four times already, she didn’t know whether one more trip to the hospital would do her daughter any good.
“At this point, I was undecided,” she said. “I was like, should I take her for IV [hydration]? Or was it just a stomach infection that’s going to go away?”
Late Thursday night, almost a week after Paris first felt sick, Colmenero chose to take her daughter to the emergency room one more time.
An answer, just in time
By the time they arrived, Paris was too weak to hold her head up and was unresponsive. The staff was alarmed but didn’t know what was causing her illness — yet.
“They thought she was going into a diabetic coma or something,” Colmenero said. “But she doesn’t have diabetes.”
Finally, in a stroke of luck, one person had the answer.
“As soon as they put her in a room in the back, the doctor comes in and tells me, ‘I had a patient just like this last week and this is COVID-related,’” Colmenero said.
At first, Colmenero didn’t believe it. After so many misdiagnoses, she doubted her daughter’s symptoms stemmed from a Covid infection she had nearly two months earlier. But after numerous blood tests, an EKG and CT scan, the medical team had convinced her.
“By three in the morning, the doctor tells me, ‘Your daughter’s not going anywhere tonight, she has Multisystem Inflammatory Syndrome,” Colmenero said. “She said her organs are inflamed and her heart is inflamed.”
They explained that Paris’s heart was so impaired that she was at risk of cardiac arrest.
“The doctor said she could code or anything could go wrong with her heart at any moment.”
At last, lifesaving treatments
Doctors immediately started Paris on emergency antibiotics and blood pressure medication and arranged for her to be transferred to the Arkansas Children’s Hospital in Little Rock. There, she was also given aspirin to prevent blood clots and IVIG for her organ inflammation — a treatment that probably saved her life.
The medical team also did multiple ultrasounds to monitor Paris’s heart and blood vessels for any life-threatening complications such as heart failure or aneurysms. But after getting the IVIG, Paris began improving rapidly.
“We were transferred to Children’s Hospital with all the specialists on Friday morning — a week after she first got sick,” Colmenero said. “By Wednesday afternoon, she was well enough to go home.”
Colmenero said she is relieved that her daughter has made almost a complete recovery but doesn’t know if she will ever get over the experience of almost losing her daughter.
“I’ll never forget every single little detail that I went through with her condition,” she said. “Now I’m always on edge, but her heart — because they feel that if she gets sick then, this is going to happen. You know, I’m always paranoid when they get sick, all of them, now.”
Colmenero also feels fortunate that the doctor who happened to be on shift that last night in the emergency room had seen a case like Paris’s.
“Kids are resilient, believe me, they are,” she said. “Today, my daughter is nine years old, and I am grateful for that. Because if I would have stayed home that night, when I was really concerned maybe she would have died. Maybe I would be in a cemetery crying because my daughter isn’t with me.”
What you can do
Dr. Dawn Wahezi, the rheumatologist at Montefiore Children’s Hospital’s MIS-C Program, said it’s important to remember that, while MIS-C is rare, parents and doctors should be mindful if a child has some of the hallmark symptoms.
“Right now, for any kid who has a fever in general, we should have a low threshold, to get them checked out by their doctor, to get tested for Covid and things like that,” she said, “especially if the fever lasts for more than a few days.”
The other things to watch for, she said, are abdominal pain, rash or conjunctivitis.
“Those are all features that I think should prompt a further workup,” Wahezi said.
Limiting the spread of Covid is also important in preventing MIS-C, she said.
“In general, parents and kids still need to stick to the masking and social distancing guidelines,” Wahezi said. “Still be careful, even though the numbers are now starting to come down and things are looking a little more reassuring.”
Be vigilant about children
Cree’Shaina Towery, whose daughter narrowly survived MIS-C, had a message for parents: “I don’t think the media should be villainized or anything like that, but I know that, if [other parents] are like myself, and were listening to the early coverage and looking at the early information about kids, I don’t think parents were on as high alert as we should have been,” Towery said.
“Because initially, it did seem like kids were not as affected. It seemed like kids were spared from the more severe cases of Covid.
“I want parents to know that, just because your child gets Covid and is asymptomatic, that does not mean that they are out of the woods. If I had to summarize it in one statement, it would be that basically, prevention should be the goal. It shouldn’t be, you know, my child will get Covid and they’ll be fine. As much effort as adults are putting into wearing a mask and staying socially distant, do the same thing with kids. I understand that we want our kids to do their youth sports, their ballet and gymnastics. But, from a mother who watched her daughter cry in pain and suffer for five days: Take Covid seriously, because it is just as serious in kids as it is in adults.
“Put the word out to parents that right around that 30-day mark, if your child has been exposed, or had Covid, to start watching them very closely, and not to let anyone invalidate what you’re seeing at home. We got sent home twice…. if I would have waited it out until Monday, when [my daughter’s] appointment was, who knows what would have happened, or if she could have been saved?
“So do not leave the hospital. If you feel like there’s something more serious going on with your child, do not take no for an answer.”