Teen raises awareness about rare post-coronavirus syndrome

Feb. 28—Rachael Busch thought she lucked out when the coronavirus gave her only mild symptoms.

Then neck pain turned into a week alone in two hospitals.

Doctors believe the 19-year-old from Mankato had a mysterious inflammatory syndrome that strikes a small percentage of young people who have had COVID-19.

"My immune system was on overdrive," is how Busch sums up the rare syndrome.

Nearly two months later, the Central High School graduate is still experiencing headaches and nightmares. But she finally feels well enough to talk about her ordeal, with the goal of educating others about the rare but potentially life-threatening coronavirus aftereffect.

"I didn't think anything like this could happen to me. You don't know who's going to get it. I want to warn people."

Rare syndrome

Busch is one of just 72 Minnesotans known to have had "multisystem inflammatory syndrome in children", or MIS-C.

Dr. Matthew Basiaga, a pediatric rheumatologist at the Mayo Clinic, said the new syndrome is rare, but families should be on guard after a young person has had or been exposed to COVID-19.

There are still many unknowns about MIS-C, said Basiaga, who was on the team that treated Busch.

"We don't know what the actual risk of getting this is. But it's pretty rare," the doctor said.

The syndrome involves an overactive immune response to COVID-19 that usually strikes around three or four weeks after infection, he said. It also has occurred in young people who never had a confirmed COVID-19 diagnosis but were exposed to the virus. It's possible they had the virus and did not know at the time.

The inflammation can impact multiple organ functions. Youths usually need to be hospitalized.

In rare cases, the syndrome can cause deadly organ failure.

But treatments to suppress the immune system and reduce inflammation usually are quick and effective, Basiaga said.

"It's very treatable in most instances," he said.

Across the United States there have been over 2,000 known cases of MIS-C and 30 deaths, according to Centers for Disease Control and Prevention data last updated Feb. 8. In Minnesota there are 72 cases and no deaths, according to Minnesota Department of Health data as of Feb. 22.

The syndrome most commonly impacts children between the ages of 1 and 14, but it also can appear in infants and older teens and young adults. The CDC also is investigating suspected isolated cases among older adults.

Like Busch, most of the youths have no underlying health conditions, her doctor said.

The syndrome disproportionately has impacted Black and Hispanic young people. It's still unclear if there is a genetic component or if that is simply because those populations also are catching COVID-19 at a disproportionate rate.

The symptoms most commonly include a prolonged fever, rash, gastrointestinal pain and fatigue.

By The Numbers

2,060: Known cases of MIS-C in the U.S.

30: Deaths from MIS-C in the U.S.

72: Known cases in Minnesota

69%: Percentage of cases that involved Black or Latino patients

No test or other definitive diagnosis exists for MIS-C. The CDC now defines the syndrome as a severe illness in a person younger than age 21 with a fever, inflammation, multisystem organ involvement and no other plausible diagnoses following a COVID-19 infection or exposure.

Mild COVID-19

Busch, her sister and her parents all came down with COVID-19 in mid-November.

Two of her family members were exposed to the virus at their workplaces. They were all still feeling well when they went in to get precautionary tests.

Busch knew she was infected a few hours before her test came back positive. She lost her senses of taste and smell and knew those were symptoms.

She and her sister experienced only a few days of mild flu-like symptoms. Her parents had some more severe symptoms but also recovered at home.

They were grateful, Busch said, knowing their bout with the coronavirus "wasn't that bad."

Later symptoms

Busch began to get sick again on Christmas Day. She initially thought her neck pain was a byproduct of too much time spent looking down at her cellphone.

But the next day she also had a fever, headache and back pain. A call to a nursing hotline brought a recommendation she go to the emergency room because she could have meningitis.

She was admitted to the Mayo Clinic Health System hospital in Mankato after an elevated heart rate and other concerns were detected by emergency room doctors and diagnostic tests did not find a cause. An unknown infection was suspected and she was put on antibiotics. But her fever did not come down, she said.

"The doctors did not know what to do," Busch said.

More tests discovered a blood clot in her lung. Blood clots are a known complication of multisystem inflammatory syndrome in children.

Consultations with doctors at the Mayo Clinic in Rochester finally yielded a likely diagnosis of MIS-C.

The diagnosis was surprisingly comforting, Busch said. Not knowing why she was sick was the scariest part of her ordeal, she said.

She was taken by ambulance to Rochester where she was placed in an intensive care unit and treated by Basiaga and other medical professionals who have some experience with MIS-C.

Treatments included a blood thinner to clear her blood clot, steroids and immunoglobul to reduce inflammation.

Busch was alone for eight of the nine days she spent hospitalized. Visitors were prohibited because of COVID-19. Her family could only comfort her through video chats.

"It was scary, but the nurses helped keep me calm," she said.

The COVID-19 restrictions eased on her final day in the hospital on Jan. 4 and her mother was permitted to come and take her home.

Her recovery was still far from over once she got home Jan. 4. Headaches, fatigue and other symptoms have persisted and twice have sent her back to the emergency room.

"I'm slowly getting better, slowly building my endurance back up," she said.

There have been psychological impacts as well, Busch said, including heightened anxiety, nightmares and fear of another flareup and the potential of still unknown long-term side effects.

"I panic every time I have a sore muscle," she said.

Raising awareness

Busch was taking a year off school and doing an internship helping with office work at the Twin Rivers Council for the Arts before she got sick.

Now that she's doing better, she's researching colleges to which to apply for next fall and searching for a job to earn tuition money in the meantime. She's also sharing her experience with MIS-C with the media, on social media and in online support groups.

She's hoping to raise awareness about the syndrome.

"With schools opening up again, I'm worried cases will go up," she said.

Busch is also talking online with other families who have a loved one with MIS-C.

"Maybe I can help them get through it," she said.

And as she plans to work in a medical-related field someday, she's now reflecting on her own health scare as an experience that will make her a more empathetic health care provider.

"Maybe this is God's plan for me to prepare me to help other people."