That has been scary enough for the then-13-year-old and his parents, who reside in Ohio. Greater than a year later, Spencer, still had most of the symptoms and, more alarming, the once healthy teen had postural orthostatic tachycardia syndrome (POTS), a condition which has caused dizziness, a racing heart when he stands, and fainting. Spencer missed the majority of the last couple of months of eighth grade due to what’s referred to as long COVID.
He gets sick quickly, says his mother, Melissa Siedlecki, who works in technology sales. The normal cold he would get rid of in just a few days takes weeks for him to feel much better.
The transformation from regular teen life to someone with a chronic illness sucked, says Spencer, who’ll turn 15 in August. I felt like I was never likely to progress. Fortunately, after some therapy at a specialized clinic, Spencer is back again to playing baseball and golf.
Spencers journey to raised health was difficult; his regular pediatrician told the household initially that there have been no treatments to greatly help him a reaction that’s not uncommon. I still get yourself a large amount of parents who heard about me through the grapevine, says Amy Edwards, MD, director of the pediatric COVID clinic at University Hospitals Rainbow Babies & Childrens in Cleveland and an assistant professor of pediatrics at Case Western Reserve University. The pediatricians either are unsure of what’s wrong, or worse, tell children you’ll find nothing wrong with you. Stop faking it. Edwards treated Spencer after his mother found the clinic via an search on the internet.
Alexandra Yonts, MD, a pediatric infectious diseases doctor and director of the post-COVID program clinic at Childrens National Hospitalin Washington, DC, has seen this too. Theyve had plenty of kids to arrive and saying weve been passed around from doctor to doctor, plus some of these dont even believe long COVID exists, she says.
But those that do get attention are generally white and affluent, something Yonts says doesnt jibe with the epidemiologic data of who COVID has affected probably the most. Black, Latino, and American Indian and Alaska Native children are more prone to be infected with COVID than white children, and also have higher rates of hospitalization and death than white children.
Its not yet determined whether these children have a specific risk factor, or if they’re just the people who’ve the resources to access the clinics. But Yonts and Edwards believe many children aren’t obtaining the help they want. High-performing kids are to arrive because they’re the people whose symptoms are most apparent, says Edwards. I believe you can find kids on the market that are getting missed because theyre already struggling due to socio-economic reasons, she says.
Spencer is among 14 million children who’ve tested positive for SARS-CoV-2, the coronavirus that triggers COVID-19, because the start of pandemic. Many pediatricians remain grappling with how exactly to address cases like Spencers. The American Academy of Pediatrics has issued only brief guidance on long COVID in children, partly because there were so few studies to utilize as a basis for guidance.
The government is looking to change that with a newly launched National Research Action Anticipate Long COVID which includes accelerating research on what the problem affects children and youths, including their capability to learn and thrive.
A CDC study published in August found children with COVID were a lot more more likely to have smell and taste disturbances, circulatory system problems, fatigue and malaise, and pain. Those that have been infected had higher rates of acute blockage of a lung artery, inflammation of the center referred to as myocarditis and weakening of the center, kidney failure, and type 1 diabetes.
Difficult to Diagnose
Despite having increased media attention and much more published studies on pediatric long COVID, its still hard for a busy primary care doctor to evaluate what might just be a cold or what is actually a group of colds and attempting to go through the dilemna of whats been going on in a 1- to 3-month period with a youngster, Yonts says.
Most children with potential or definite long COVID remain being seen by individual pediatricians, not in a specialized clinic with quick access to an army of specialists. Its not yet determined how many of these pediatric clinics exist. Survivor Corps, an advocacy group for those who have long COVID, has posted a map of locations providing care, but few are specialized or concentrate on pediatric long COVID.
Long COVID differs from multisystem inflammatory syndrome in children (MIS-C), which occurs inside a month roughly of infection, triggers high fevers and severe symptoms in the gut, and frequently results in hospitalization. MIS-C isn’t subtle, says Edwards.
The long COVID clinic doctors said the majority of their patients weren’t very sick initially. Anecdotally, of the 83 kids that weve seen, most experienced mild, very mild, as well as asymptomatic infections initially, and went on to possess long COVID, says Yonts.
We view it even yet in children who’ve very mild disease as well as are asymptomatic, agreed
Allison Eckard, MD, director of pediatric infectious diseases at the Medical University of SC in Charleston.
Fatigue, Mood Problems
Yonts said 90% of her patients have fatigue, and several likewise have severe symptoms within their gut. Those along with other long COVID symptoms will undoubtedly be viewed more closely in a 3-year study the Childrens National Hospital does combined with the National Institute of Allergy and Infectious Diseases, says Yonts.
You can find no treatments for long COVID itself.
Management is most likely more the right term for what we do inside our clinic at this stage, says Yonts. Which means coping with fatigue and managing headache and digestive symptoms with medications or coping strategies. Guidelines from the American Academy of Physical Medicine and Rehabilitation help inform how exactly to help kids safely resume exercise.
At the Childrens National Hospital clinic, children will typically talk with a team of specialists including infectious diseases doctors on a single day, says Yonts. Psychologists help children with coping skills. Yonts is careful never to imply long COVID is really a psychological illness. Parents will just turn off, because for such a long time, theyve been told that is all a mental thing, she says.
In in regards to a third of children, symptoms progress by themselves, & most kids progress as time passes, the doctors say. But many still struggle. We dont discuss cure, because we dont know very well what cure appears like, says Edwards.
Vaccination COULD BE Best Protection
Vaccination appears to help reduce the chance of long COVID, perhaps by around half. But parents have already been slow to vaccinate children, especially the young. The American Academy of Pediatrics reported that by Aug. 3, just 5% of children under age 5, 37% of these ages 5-11, and 69% of 12- to 17-year-olds have obtained a minumum of one dose of a COVID-19 vaccine.
We’ve tried to essentially push vaccine among the ways to assist in preventing a few of these long COVID syndromes, says Eckard. But that advice isn’t always welcome, she says. Eckard told the story of a mother who refused to possess her autistic son vaccinated, even while she tearfully pleaded for help along with his long COVID symptoms, which had also worsened his autism. The girl told Eckard, Nothing it is possible to say will convince me to obtain him vaccinated. She thought a vaccine will make his symptoms a whole lot worse.
The very best prevention would be to you shouldn’t be infected to begin with, the doctors say.
The more times you obtain COVID, the more you boost your threat of getting long COVID, says Yonts. The more times you roll the dice, eventually your number could appear.