‘Everything smells like a burning cigarette,’ WVU leads study of long COVID in kids

Young people are the focus of work from West Virginia University  researchers to unravel the mystery of “long COVID” — the health problems that continue to affect some COVID-19 patients for weeks or months.

The National Institutes of Health is funding the study of long COVID’s ramifications on pediatric patients and their families under the direction of Kathryn Moffett  and  Lesley Cottrell  from the WVU  School of Medicine, part of the NIH Researching COVID to Enhance Recovery or “RECOVER” Initiative.

The study explores questions that still vex scientists and doctors more than two years into the pandemic: Why do some pediatric COVID patients develop long COVID while others don’t? How prevalent is long COVID among kids, teens and young adults? Just how long is long COVID in pediatric patients? And what can be done to help them and the family members who care for them?

Many symptoms, few explanations

Nothing related to long COVID is well understood.

“Ultimately, this study is about helping kids — about helping our patients — because we really do not know what ‘long COVID’ means,” said Moffett, a clinical professor of pediatrics and chief of the Pediatric Infectious Diseases Division.

Moffett and Cottrell’s study will involve participants who are infants, 25-year-olds and everything in between.

“Zero to 17 would be the pediatrics, but there is a portion of this that still extends from 18 to 25 because some people in those age groups still see their pediatrician,” said Cynthia Mamula, the project’s research coordinator.

Some of the participants will have been diagnosed with COVID in the past. The rest will have never received a COVID diagnosis.

“We have the opportunity to follow two groups of children based on their exposure to COVID,” said Cottrell, director the Center for Excellence in Disabilities and a professor of pediatrics. “This provides a unique comparison in child development to identify where differences in development may be found related to COVID. We anecdotally see differences, but have not formally examined this.”

Because a formal examination of this topic is so important, the research team is recruiting study participants regardless of whether they’ve had COVID or not.

As Moffett put it, “We will enroll any child, even those who have not had COVID.”

For four years, the researchers will follow the participants to analyze any long-term COVID symptoms that arise, persist, evolve or disappear.

Once participants have contracted COVID — if they do — they or their caregivers will fill out questionnaires about their experiences with the disease, their symptoms and any ongoing effects.

“Depending on their responses to those questionnaires, the kids that seem to be having the more long-term effects will most likely be asked to then participate in more in-depth study activities, such as ECG testing, blood tests, spirometry — those kinds of things,” Mamula said.

Spirometry involves exhaling into a device as hard as possible. The force and volume of the exhalation are measures of lung health.

When someone undergoes an ECG, or electrocardiogram, sensors placed on their chest detect electrical signals from their heart. A machine records those signals as waves on paper and a researcher or health provider can analyze them to learn about the person’s heart function.

And although blood tests can scare some children, this study relies on an unconventional blood-test device that is relatively pain-free, can be used at home and, according to Moffett, “shouldn’t be frightening at all for the parents or the kids.”

“You just clean the skin, dry it and apply this device to the arm or the thigh,” she said. “Then you go, ‘OK, let’s count: one, two, three,’ and you push a button. It makes a clicking sound. They’re probably not going to feel the little lancet going in. It’s very small. They’ll feel some pressure, and they’ll hear the click, and then it’s done.”

The data that the researchers glean from blood tests, ECGs, spirometer readings and the like will be kept strictly confidential.

That data is essential because the researchers can evaluate it for biomarkers that may be signs of long COVID susceptibility.

Broadly speaking, a biomarker is anything that can be measured as a sign of someone’s clinical condition. To name one common example, the presence of hCG, maternal serum human chorionic gonadotrophin, in the urine indicates pregnancy.

In this case, Cottrell and Moffett are concerned specifically with biomarkers that signify a higher risk of developing long COVID.

Pinpointing such biomarkers might make it possible to predict someone’s long COVID risk with a simple test.

‘It’s been nine months’

The study has already enrolled its first participant: a 13-year-old named Donavon Mastrangelo, from Hedgesville.

“Our son has been experiencing COVID symptoms since October of 2021, for roughly nine months,” said his mother, Melissa Mastrangelo. “He was diagnosed with Lyme arthritis in July 2021, and then once we got COVID, he just hasn’t bounced back.”

Long COVID symptoms range widely, and they can vary dramatically between any two people who have the condition. They include fatigue, joint pain, shortness of breath, heart palpitations, changes to smell and taste, and a lack of concentration known as “brain fog.”

Fatigue, body aches, poor sleep and altered taste and smell are some of the long COVID symptoms Donavon is dealing with.

“Everything smells like a burning cigarette,” his mother said. “Gross, right?”

In addition, she suspects that her 17-year-old son has lingering COVID problems of his own.

“He is struggling, too, with focus issues, sleeping and not feeling rested,” she said. “His taste and smell are definitely altered. It’s been nine months and he is frustrated as well. He was my child who was last to bed and first to rise, always busy doing projects, super-efficient. Now, it’s the opposite.”

The symptoms that bedevil Mastrangelo’s sons may be especially unfortunate, given that the family owns and operates a blueberry farm.

Energy, stamina and a reliable sense of taste are three qualities that can help someone plant, grow, harvest and enjoy crops on a family-run farm. But they’re also qualities that long COVID seems adept at sapping.

A family affair

Long COVID’s effects can ripple across an entire household, and for that reason, the study isn’t limited to COVID patients’ experiences. It encompasses what their family members have been through, too.

“There are several surveys incorporated within this study that assess things like how this has affected schedules and daily living, if it has produced stress and, if so, in what way,” Cottrell said. “Those items could speak to the mental health piece of this, which is secondary, but very related, to the COVID experience.”

Moffett encourages parents to consider enrolling their kids in the study.

“I heard somebody say that the kids will be guinea pigs,” she said. “They’re not being guinea pigs. We can’t think about research in that way. This is a way for us to learn about COVID and how it affects kids in a pretty easy manner.”

Based on state reports, the American Academy of Pediatrics estimates nearly 14 million children in the United States have tested positive for COVID since the start of the pandemic.

If just 2% of those children were to develop long COVID as some conservative estimates predict, it would equal 280,000 people. That’s greater than the populations of Boulder, Colorado, Trenton, New Jersey and Gulfport, Mississippi combined.

And more kids are infected every day.

“I think a kid could feel very proud of themselves for contributing to a science study to try to figure out why kids, even babies, have COVID the way they do,” Moffett said. “Kids like to help other people. They’ll collect dog food for a shelter. They’ll collect binkies for babies who don’t have them. If they sign up for this study, they may or may not learn something about themselves, but they’re going to help other kids.”

To learn more about the study or eligibility, visit recovercovid.org or contact Cynthia Mamula at [email protected].

Research reported in this publication was supported by the National Institutes of Health and is part of the NIH Researching COVID to Enhance Recovery Initiative. The content is solely the responsibility of the authors and does not necessarily represent the official views of NIH. 

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