COVID-19, a puzzling virus in itself, has continued to vex doctors and patients with its sometimes serious, debilitating aftereffects. These persistent symptoms, labeled long COVID and affecting every demographic, are particularly worrying as the effects on children and teens are increasingly being recognized.
One challenge in treating the condition is that many people still question that COVID in general and long COVID in particular are real threats to children, said Dr. Amy Edwards, director of the Pediatric COVID Recovery Clinic and associate medical director for infection control at UH Rainbow Babies and Children’s Hospital in Cleveland. But kids do get COVID, she said. “Kids can even have severe COVID” with some dying. Not all of them had significant preexisting conditions, either; some “were perfectly healthy,” she noted. Yet there are still doctors who doubt that children can get long COVID, so Edwards said it is imperative to get the word out. “We have to help these kids” as there are serious concerns about their long-term outcomes if they don’t get help, she noted.
Bree Saligumba, a now-12-year-old California girl knows first hand the burden of struggling with long COVID. In a prepanel conversation, her mother, Marci Saligumba, described Bree as an “A” student and natural athlete who came down with a mild case of COVID in March 2020. Soon after, though, Bree started experiencing rashes, pain, shaking, confusion , blurred vision and brain fog. Once she even passed out for 12 minutes at school.
“At one point,” her mother noted, Bree had appointments “every single day of the week.” Her daughter’s care became fragmented and uncoordinated among the different practitioners, including one who made it clear that he didn’t think long that COVID was the cause of Bree’s medical issues.
“I think we have our work cut out for us to kind of create awareness that this is the real deal,” said Dr. Uzma Hasan, medical director of the Pediatric Post-COVID Care Program and division chief, pediatric infectious diseases at Cooperman Barnabas Medical Center, an RWJ Barnabas Health facility in Livingston, New Jersey. Edwards added, “I can’t tell you how many parents or patients have cried in my COVID recovery clinic because they’re just so relieved to find somebody who will spend the time listening to them.”
Estimates suggest that between 4% and 25% of kids who get COVID develop long COVID, said Dr. S. Kristen Sexson Tejtel, director of the COVID-19 Return to Activity Clinic and of preventive cardiology at Texas Children’s Hospital in Houston. There is no lab test to precisely diagnose the condition, which makes it hard to pin down, noted Tejtel, who is also an associate professor of pediatric cardiology at the Baylor College of Medicine. Symptoms may also vary from patient to patient, she explained, though they tend to fall into one of three groupings: “neuro-headache-y pain,” “dizziness-passing out,” and “GI (gastrointestinal)-stomach pain,” and these can “intermingle for sure.”
“Many of these children are struggling in school. They can’t do the things they want to do with their friends,” Tejtel said. About one-third of her patients had some discussion about homebound or other alternative modes of schooling. This is a significant number of kids potentially being removed from their normal routine, she noted, which can take “a huge toll” socially, emotionally and developmentally on them. With long COVID, these kids “aren’t the same as they were before,” she said. “The sparkle has gone from their eyes. And that’s what we’re working to get back.”
So far, clinicians are finding that females tend to be more severely impacted. And, surprisingly, many of the affected children only had mild or even asymptomatic COVID, Hasan observed. Then “a month out after their episode (they) were starting to become dysfunctional because of headaches or fatigue, or not being able to process information or having brain fog or having dizzy spells where they couldn’t function.” Many of these kids are hyper-achievers, she said. They see it as a personal failure that they are struggling to get back on their feet. “Lots of them had severe anxiety and depression because of that.”
Edwards said her clinic takes multiple approaches to treating long COVID. “We want to work to control the symptoms so that the patient can be functional.” To help regulate the autonomic nervous system, which controls basic functions like heart rate and breathing and seems to get disrupted with long COVID, Edwards’ team tries tweaking patients’ diets, such as their fluid and salt intake. In addition, various medications may be tried. She also noted that the hospital has started an autonomic rehabilitation program “which is working really well for a specific subgroup of patients.” Her clinic also offers mental health services.
Because many of these kids are young and otherwise healthy, the hope is that “their bodies can bounce back and heal themselves,” Edwards added. Many patients are being discharged fully well; some improve but may still need long-term, chronic management for persistent symptoms. “Those are the kids that I’m genuinely worried about,” Edwards noted. “I hope that one day we will find a real solid cure instead of this kind of mishmash of trying a bunch of experimenting.”
On that front, data is emerging that suggests the COVID vaccine can serve as a potential treatment for many patients. Hasan notes that most of the long COVID patients he has seen are unvaccinated. But, anecdotally, she has observed that, “the vast majority of kids who have (subsequently) gotten vaccinated, I would say, about six to eight weeks later, we really see a significant improvement in their symptoms.”
Various theories are developing as to why this happens, she noted: “Is there some sort of autoimmune process that’s offset by the vaccination? Do they have a hidden viral reservoir that’s neutralized?” No clear answer has emerged yet.
It’s also not clear why some children are recovering from long COVID relapses, particularly after getting reinfected, Edwards said. “We have a lot of questions about the long-term prognosis for these kids, and there’s very little being done to address it so far – globally – except for in these small, isolated clinics.”
Another major challenge facing children who develop long term COVID is psychological trauma that can manifest as mood changes – anxiety, depression or irritability, for example, Malone said. She tries to help kids get back into sports, clubs and other social activities so they can regain a sense of normalcy. That may require medications and physical therapy, he noted, as well as mental health support for the whole family.
“What’s the most challenging,” Edwards said, “is just the sheer volume” of patients. In Ohio, between 30,000 and 70,000 children have long COVID. She sees kids whenever she can – even at night. But despite these efforts, “I can’t possibly see them all.” She emphasized the need for more help from state and federal officials as well as from schools to assist children who are struggling.
Many states don’t have long COVID clinics, Malone added. So more needs to be added nationwide, along with new clinical care models, “where you can spend the time with the patient and do what you need to do.”
“If the child needs immediate care, they need immediate care,” Hasan agreed. Parents “should not have to wait for four months to care for their child.”
For health systems looking to launch long COVID clinics, Edwards advised taking a multidisciplinary approach, where by multiple specialists come together “to focus at least partially on long COVID kids” because “repetition helps breed familiarity with the illness and how to manage it.” She also recommended offering a virtual care option. “A lot of these kids, especially if they’re going through a really bad crash or really bad period of time, may not really be able to get out to see a bunch of doctors, so having that virtual option available, at least part of the time, can really help.”
In addition, Edwards urged general pediatricians and family medicine practitioners to listen to and believe their patients and then, to help control their symptoms as much as possible. “If everybody even did a little bit, it would go a long way,” she said.
Tejtel agreed, noting Texas: “We can’t take care of 70,000 children, even among all of the clinics that we have, and that’s only one state.” Primary care clinicians, she said, will be critical players in addressing the long-going forward epidemic of pediatric pediatric COVID-19, serving as quarterbacks who coordinate everything a patient needs – from consultations with various specialists to lab tests. This comprehensive “medical home” model may help more children around the country get the care they need. “If we can get to it faster, that may be the best place for it to happen,” she said.
Malone also advised practitioners to avoid pushing kids too quickly back to their lives as “that doesn’t always work … because you want to avoid crashes and sort of a worsening of symptoms.”
In fact, caring for the family as a whole, Hasan noted, “is a huge part of this process” in treating long COVID. It can be tough for parents to take a day off work to take a child to a series of appointments, she said, so “we try our hardest to make sure that it’s a one-stop shop” to ease their burden.
That attitude eventually helped Bree Saligumba recover enough to go back to school and sports, though she still experiences flare-ups that need medical management. Her mother Marci has this message for doctors: “Please believe your patients when they tell you that something is wrong.” Even if lab work comes back to normal, that doesn’t mean it’s all in a patient’s head, she said. “We need help, and we have to trust that you will find a way to help us out.”