Diagnosing Kids with Long COVID Can Be Tricky: Experts

Aug. 15, 2022 – When Spencer Siedlecki received COVID-19 in March 2021, he was sick for weeks with excessive fatigue, fevers, a sore throat, dangerous complications, nausea, and ultimately, pneumonia.

That was scary sufficient for the then-13-year-old and his mother and father, who reside in Ohio. More than a 12 months later, Spencer, nonetheless had most of the signs and, extra alarming, the as soon as wholesome teen had postural orthostatic tachycardia syndrome (POTS), a situation that has triggered dizziness, a racing coronary heart when he stands, and fainting. Spencer missed many of the previous couple of months of eighth grade due to what is named lengthy COVID.

“He gets sick very easily,” says his mom, Melissa Siedlecki, who works in know-how gross sales. “The common cold that he would shake off in a few days takes weeks for him to feel better.”

The transformation from common teen life to somebody with a persistent sickness “sucked,” says Spencer, who will flip 15 in August. “I felt like I was never going to get better.” Fortunately, after some remedy at a specialised clinic, Spencer is again to enjoying baseball and golf.

Spencer’s journey to raised well being was troublesome; his common pediatrician advised the household at first that there have been no therapies to assist him – a response that’s not unusual. “I still get a lot of parents who heard of me through the grapevine,” says Amy Edwards, MD, director of the pediatric COVID clinic at University Hospitals Rainbow Babies & Children’s in Cleveland and an assistant professor of pediatrics at Case Western Reserve University. “The pediatricians either are unsure of what is wrong, or worse, tell children ‘there is nothing wrong with you. Stop faking it.’” Edwards handled Spencer after his mom discovered the clinic by means of an web search.

Alexandra Yonts, MD, a pediatric infectious ailments physician and director of the post-COVID program clinic at Children’s National Hospital in Washington, DC, has seen this too. They’ve had “a lot of kids coming in and saying we’ve been passed around from doctor to doctor, and some of them don’t even believe long COVID exists,” she says.

But those that do get consideration are usually white and prosperous, one thing Yonts says “doesn’t jibe with the epidemiologic data of who COVID has affected the most.” Black, Latino, and American Indian and Alaska Native kids usually tend to be contaminated with COVID than white kids, and have greater charges of hospitalization and demise than white kids.

It’s not clear whether or not these kids have a selected danger issue, or if they’re simply those who’ve the assets to get to the clinics. But Yonts and Edwards consider many kids should not getting the assistance they want. High-performing children are coming in “because they are the ones whose symptoms are most obvious,” says Edwards. “I think there are kids out there who are getting missed because they’re already struggling because of socio-economic reasons,” she says.

Spencer is certainly one of 14 million kids who’ve examined constructive for SARS-CoV-2, the coronavirus that causes COVID-19, for the reason that begin of the pandemic. Many pediatricians are nonetheless grappling with the best way to deal with instances like Spencer’s. The American Academy of Pediatrics has issued solely temporary steering on lengthy COVID in kids, partially as a result of there have been so few research to make use of as a foundation for steering.

The federal authorities is aiming to vary that with a newly launched National Research Action Plan on Long COVID that features dashing up analysis on how the situation impacts kids and youths, together with their capability to study and thrive.

A CDC examine revealed in August discovered kids with COVID have been considerably extra more likely to have odor and style disturbances, circulatory system issues, fatigue and malaise, and ache. Those who had been contaminated had greater charges of acute blockage of a lung artery, irritation of the guts generally known as myocarditis and weakening of the guts, kidney failure, and sort 1 diabetes.

Difficult to Diagnose

Even with elevated media consideration and extra revealed research on pediatric lengthy COVID, it’s nonetheless laborious for a busy main care physician “to sort through what could just be a cold or what could be a series of colds and trying to look at the bigger picture of what’s been going on in a 1- to 3-month period with a kid,” Yonts says.

Most kids with potential or particular lengthy COVID are nonetheless being seen by particular person pediatricians, not in a specialised clinic with quick access to a military of specialists. It’s not clear what number of of these pediatric clinics exist. Survivor Corps, an advocacy group for folks with lengthy COVID, has posted a map of areas offering care, however few are specialised or concentrate on pediatric lengthy COVID.

Long COVID is totally different from multisystem inflammatory syndrome in kids (MIS-C), which happens inside a month or so of an infection, triggers excessive fevers and extreme signs within the intestine, and sometimes ends in hospitalization. MIS-C “is not subtle,” says Edwards.

The lengthy COVID clinic medical doctors mentioned most of their sufferers weren’t very sick at first. “Anecdotally, of the 83 kids that we’ve seen, most have had mild, very mild, or even asymptomatic infections initially,” after which went on to have lengthy COVID, says Yonts.

“We see it even in children who have very mild disease or even are asymptomatic,” agreed

Allison Eckard, MD, director of pediatric infectious ailments on the Medical University of South Carolina in Charleston.

Fatigue, Mood Problems

Yonts mentioned 90% of her sufferers have fatigue, and plenty of even have extreme signs of their intestine. Those and different lengthy COVID signs can be checked out extra carefully in a 3-year examine the Children’s National Hospital is doing together with the National Institute of Allergy and Infectious Diseases, says Yonts.

There are not any therapies for lengthy COVID itself.

“Management is probably more the correct term for what we do in our clinic at this point,” says Yonts. That means coping with fatigue and managing headache and digestive signs with medicines or coping methods. Guidelines from the American Academy of Physical Medicine and Rehabilitation assist inform the best way to assist children safely resume train.

At the Children’s National Hospital clinic, kids will usually meet with a crew of specialists together with infectious ailments medical doctors on the identical day, says Yonts. Psychologists assist kids with coping abilities. Yonts is cautious to not suggest that lengthy COVID is a psychological sickness. Parents “will just shut down, because for so long, they’ve been told this is all a mental thing,” she says.

In a few third of youngsters, signs get higher on their very own, and most youngsters get higher over time, the medical doctors say. But many nonetheless battle. “We don’t talk about cure, because we don’t know what cure looks like,” says Edwards.

Vaccination May Be Best Protection

Vaccination appears to assist scale back the chance of lengthy COVID, maybe by as a lot as half. But mother and father have been sluggish to vaccinate kids, particularly the very younger. The American Academy of Pediatrics reported that as of Aug. 3, simply 5% of youngsters below age 5, 37% of these ages 5-11, and 69% of 12- to 17-year-olds have acquired at the least one dose of a COVID-19 vaccine.

“We have tried to really push vaccine as one of the ways to help prevent some of these long COVID syndromes,” says Eckard. But that recommendation isn’t at all times welcome, she says. Eckard advised the story of a mom who refused to have her autistic son vaccinated, at the same time as she tearfully pleaded for assist together with his lengthy COVID signs, which had additionally worsened his autism. The girl advised Eckard, “Nothing you can say will convince me to get him vaccinated.” She thought a vaccine might make his signs even worse.

The finest prevention is to keep away from being contaminated within the first place, the medical doctors say.

“The more times you get COVID, the more you increase your risk of getting long COVID,” says Yonts. “The more times you roll the dice, eventually your number could come up.”