9 minute read
The Long Road to Recovery
For kids and teens with chronic COVID, comprehensive clinic care can be tough to find
by Chelsea Cirruzzo
M
ORGAN RANDALL’S family thought they’d dodged a bullet. The then15-year-old’s symptoms were mild when she got COVID-19 in December 2020 – no fever, but the Massachusetts teen lost her sense of smell and taste and had a sore throat. The family went into quarantine, and five days later, Morgan felt better, passing time by joining her dance team over Zoom from her bedroom.
Winter break rolled around and Morgan took a breather from school and dancing. When she returned, something had changed. During more intense dance sessions, she was short of breath and her legs, strong from years of tap dancing and pirouettes, were tired and weak. Both Morgan and her mom, Jessica, figured she was still recovering from COVID-19, but by mid-February 2021, the symptoms weren’t letting up. Morgan could no longer make it through her usual solo. Scared, they turned to a pediatrician who quickly pulled Morgan from dance – an activity she’d done since she was 3 – out of fear that her heart was inflamed.
“I was just confused because I was like, ‘Why is my body giving up on me?’” says Morgan, now 17. Morgan is among an unknown number of children and teens who have signs of long COVID, which is often characterized by fatigue, malaise, shortness of breath and other symptoms that persist or surface anew after an initial bout with COVID-19. In 2021, the National Institutes of Health launched an initiative to study long COVID, and the Centers for Disease Control and Prevention unveiled guidance for treating patients with post-COVID conditions. But with much still to be learned about long COVID in adults – who are more likely to die or develop severe illness from COVID-19 – researchers also know very little about long COVID in children, particularly when it comes to who is getting it and how best to treat them. While a number of long COVID clinics have cropped up around the country to treat adults through a system of coordinated, multidisciplinary care, pediatric clinics remain relatively limited, meaning plenty of children and their guardians must navigate a patchy treatment landscape and long wait times.
MORGAN RANDALL
Limited information
Research on pediatric long COVID is still in its infancy, but experts stress that more studies are sorely needed.
Dr. Dan Cooper, a pediatric pulmonologist and professor of pediatrics at the University of California-Irvine, says that while children don’t tend to get as severely ill from COVID19 as adults, they’re still getting sick, and some are developing long-term symptoms, such as fatigue and shortness of breath. What’s more, he says the “relatively slow rate” of COVID vaccination among younger kids renders them more vulnerable to infection – and thus, long COVID.
Although long COVID doesn’t appear to be as common in kids as it is in adults, the science on pediatric long COVID is steps behind where it is in adults, explains Dr. Sean O’Leary, vice chair of the American Academy of Pediatrics Committee on Infectious Diseases.
Cooper says studies on pediatric long COVID need to focus on
MORGAN RANDALL, several groups in particular: kids who had asymp17, COMPLETES tomatic or mild cases of COVID-19, those who were A SOLO ON THE hospitalized and those who experienced multisystem COMPETITION inflammatory syndrome, or MIS-C – an uncommon STAGE IN MAY 2022 but serious condition in which parts of the body like – A FEAT SINCE the brain, heart, lungs or eyes become inflamed. More BECOMING ILL WITH than 8,600 patients in the U.S. as of late June 2022 LONG COVID. had met the criteria for MIS-C, which can lead to post-COVID conditions, according to the CDC. At least 70 patients have died of MIS-C. O’Leary says treatment for pediatric long COVID should focus on the specific needs of children, particularly on keeping them active through approaches such as physical therapy. “One of our goals is to try to keep kids from getting into sort of this vicious cycle of deconditioning” in which they’re so fatigued, they “don’t want to do anything,” O’Leary says. Research must explore the
commonality of symptoms among kids with long COVID to help tailor future treatments, he adds.
For Breanna “Bree” Saligumba, an 11-year-old from California who loves soccer and track, ongoing symptoms since getting COVID-19 in March 2020 have caused her to miss school several times a month, says her mom, Marci. Bree is dealing with everything from nerve pain, body tremors and difficulty breathing to inflammatory arthritis and fainting spells.
On a good day, Bree is the fastest girl on her soccer team, and has clocked running speeds on par with high school track athletes. But when her long COVID symptoms flare up, Bree struggles to play and tires easily. “I can’t stand anymore and it feels like I can’t move anymore and it hurts really bad,” she says.
Bree has been to the emergency room and urgent care so many times the family has lost count. In March 2022, Bree was rushed to the hospital by ambulance after she was found unresponsive on the school’s blacktop.
To manage her symptoms, Bree gets physical therapy, acupuncture and chiropractic care. She also uses several inhalers and painkillers. Although she is vaccinated, Bree contracted COVID-19 for a second time in May 2022.
Marci says Bree’s pediatrician helped coordinate much of her daughter’s care, sending the pair to multiple hospitals where Bree is seeing a rheumatologist, cardiologist, allergist and pain specialist.
“Her doctors are doing everything they can, but this virus is so new, there’s still things they need to learn,” Marci says.
A lag in clinics
One model for helping kids with long COVID takes a multidisciplinary approach to care, using a clinic as a hub that can connect patients to specialists all working together. But the availability of such clinics is lacking for youth.
That could be because the doctors running programs like these may simply have more experience working with adults, O’Leary says.
“It depends where you are, and it depends on the comfort level of the clinicians running the clinic,” he says.
It’s a challenge Jessica Randall, in Massachusetts, says she faced early in seeking out care for Morgan.
“When we first started looking, I contacted a couple of hospitals in Boston and they said, ‘We’re so sorry but we can’t see her because we’re not licensed to see pediatric cases,’” she says. Jessica recalls being on the phone daily with Morgan’s pediatrician trying to find options.
There are exceptions. Michigan Medicine, for example, opened a pediatric clinic in 2021 at C.S. Mott Children’s Hospital in Ann Arbor. Clinic leader Dr. Carey Lumeng, a pediatric pulmonologist and professor at the University of Michigan, says
the idea came after he began seeing a pattern in early 2021: Kids who primarily had mild COVID-19 infections in 2020 were coming back for care. Given the prevalence of long COVID in adults and the fact that more than 4 million children had tested positive for COVID-19 at that time, he began to wonder: Could there be thousands of kids with long COVID out there? (At least 14 million children have tested positive for COVID-19 since the pandemic began.) Michigan Medicine wanted to be prepared, so the health system began building a model involving experts in areas such as pulmonology, cardiology, physical rehabilitation and psychology, he says. Of the more than 100 kids who’ve been seen by the clinic, many are over age 10, most are in their teens and several have had persistent symptoms for over a year. Very few had severe COVID19 symptoms initially, though a good number of patients lost their sense of smell and taste, Lumeng says. The clinic currently requires a referral from a primary care physician or a pediatric subspecialist for an appointment. “I’d say the most prominent feature that we see is shortness of breath, chest pain – which again I think mirrors what is seen in adults,” Lumeng says. Many of the clinic’s patients are also active in sports and discovered their lingering conditions once they tried to take part again. These patients, Lumeng
14 million kids have developed COVID-19.
says, have been responding to asthma treatment, even if they’ve never previously had asthma. Meanwhile, many kids with chest pain show no evidence of a lung or heart problem, he adds. That’s not unlike Bree, who says the inhalers she’s received have helped her play again. “I can run a little bit longer,” she says, “and actually get some goals.” Lumeng estimates there may be just 10 or so pediatric long COVID clinics in the U.S., though an international consortium “is trying to get a handle” on the condition while developing key measures to
help make research across centers possible, he says. Still, it’s hard to find pediatric doctors with experience managing fatigue, loss of smell or even chest pain, he adds.
“So, you have to make sure you have a multidisciplinary team and have somebody to take the reins to at least triage,” Lumeng says. Otherwise, patients are seeing multiple disconnected specialists who don’t know all that’s going on, he adds.
At the Kennedy Krieger Institute in Baltimore, which also launched a long COVID clinic for kids, that multidisciplinary approach is key. The clinic features a team that includes experts in physical therapy and behavioral health, as well as an education specialist, since several patients are having difficulties in school.
Because long COVID is often a constellation of symptoms, patients and families find it helpful to have an interdisciplinary team, says Dr. Laura Malone, a pediatric neurologist and clinic co-director. The task of tackling each symptom individually can be daunting and frustrating otherwise.
Working together allows team members to bring different perspectives to the table, enabling the development of a cohesive treatment plan for the patient at the end of the visit, she says.
For Morgan, seeing specialists who get her needs has been huge. She saw a physical therapist virtually, who helped her with breathing exercises. Morgan’s also seen a pulmonary specialist who diagnosed her with exercise-induced asthma. After a heart screening came back normal, she was gradually able to return to dance. In early 2022, when Morgan was finally well enough to finish a solo on the competition stage – a first since becoming chronically ill – she cried tears of relief, her mom recalls.
While she’s not 100%, Morgan, now vaccinated, is feeling much better, despite a second bout of COVID-19 in 2022. The only lingering symptoms she has are fatigue and brain fog, particularly if she overdoes it. Even so, she worries about her future. “I’m very competitive,” she says. “Will I ever be able to dance the same again? It’s kind of scary.”
For Jessica Randall, Morgan’s mom, the entire process has been frustrating. She says it took eight weeks to first get Morgan into various specialists’ offices. She’s aware of a post-COVID clinic with Boston Children’s Hospital, and has an appointment on the books to dig deeper into Morgan’s persistent fatigue.
Meantime, she wants to see more pediatric clinic options come online to better treat kids during what can be a scary period of limbo.
“To some people, eight weeks doesn’t seem like a long time,” she says. “But when it’s your child and you’re not sure what’s wrong, and you don’t know if her heart is inflamed, it’s a long time to wait.” l
