Long COVID and children: The unseen casualties of COVID-19
Since children appear to be less at risk of severe COVID-19 than adults, those who do develop the disease may not receive as much attention from researchers and the media. Yet some of these children have become “long haulers” who experience symptoms months after they first contracted SARS-CoV-2.
Some studies have argued that children have a lower risk of developing severe COVID-19 — the disease caused by SARS-CoV-2 — than adults.
Reports indicate that, in most cases, children who contract the new coronavirus develop mild-to-moderate symptoms or remain asymptomatic.
In most cases of COVID-19 in children, symptoms should typically improve and then disappear altogether after a couple of weeks from symptom onset. Yet some children experience ongoing symptoms weeks or even months after their initial illness — a phenomenon commonly referred to as “long COVID.”
How do ongoing symptoms of COVID-19 actually impact the day-to-day lives and well-being of the children and adolescents who experience them?
To answer this and many other questions, Medical News Today spoke to the parents of children and teens with long COVID.*
In this Special Feature, we present, at length, the stories of four parents whose children still experience debilitating symptoms. These parents spoke to us about the difficult journey towards securing an accurate diagnosis, and the often fruitless search for formal support.
For an informed medical perspective on long COVID, MNT sought the expertise of Dr. Amanda Morrow, rehabilitation physician, and Dr. Laura Malone, neurologist — both from the Kennedy Krieger Institute, a Johns Hopkins affiliate in Baltimore, MD.
Dr. Morrow is an assistant professor of physical medicine and rehabilitation at the Johns Hopkins School of Medicine. Dr. Malone is also an assistant professor of Neurology and Physical Medicine and Rehabilitation at the Johns Hopkins University School of Medicine.
Drs. Morrow and Malone offered MNT joint comments about long COVID in children.
There are limited comprehensive data about children with long-lasting symptoms of COVID-19, so it can be difficult to say just how common this phenomenon is among the under 18s.
The most detailed sets of data, for the time being, have been collected by the Office for National Statistics (ONS) in the United Kingdom.
According to updated experimental estimates published by the ONS in January 2021, around 12.9% of children aged 2–11 years, 14.5% of those aged 12–16 years, and 17.1% of teenagers and young adults aged 17–24 years still had COVID-19 symptoms at 5 weeks after the initial onset.
A study headed by researchers from the Department of Woman and Child Health and Public Health at the Fondazione Policlinico Universitario A. Gemelli IRCCS in Rome, Italy, also suggests that long COVID may be more common in children than public health experts had expected.
The study — as yet unpublished and not peer reviewed, shared on the preprint platform medRxiv — analyzed the health data of a cohort of 129 children diagnosed with COVID-19 between March and November 2020 in Italy.
Of these, 52.7% reported experiencing at least one symptom of COVID-19 at 120 days (approximately 4 months) or more after the initial diagnosis.
In a recent webinar for The BMJ, Dr. Elizabeth Whittaker — senior clinical lecturer in pediatric infectious diseases and immunology at Imperial College London in the U.K. — outlines the wide array of symptoms children with long COVID can experience.
She cites data from the Long Covid Kids study — an independent research endeavor spearheaded by the Long Covid Kids advocacy group — which indicate that, in children, long COVID symptoms can include:
In the conclusion of her talk, Dr. Whittaker notes that, while “children experience less severe disease than adults,” it is “crucial to support recovery for those who do experience significant disease,” such as long COVID and PIMS.
She also adds that:
“We have an urgent need for research into post-COVID syndromes and persistent symptoms in children, because […] they’re at the beginning of their lives, they’ve had a really tough year, and they deserve to be put first.”
The parents of children and adolescents with long COVID that MNT spoke to also emphasized, at length, that doctors need to be better informed about the disease in children, and that there is an urgent need for better specialized care.
Gemma, from Texas, whose 9-year-old son is currently in inpatient rehabilitation for long COVID, told us about her child’s difficult and ongoing journey in the search for effective care for his persistent symptoms.
Her son tested positive for COVID-19 on a rapid antigen test on February 21, 2021. Gemma recounted that her son had received inpatient care at the hospital for abdominal pain a week prior to the test.
When her son started experiencing headaches, stomach aches, a sore throat, and fatigue after his release from the hospital, Gemma knew something was afoot.
“Two [of his] siblings had tested positive for [COVID-19], so we had him tested to rule it out, thinking it was a relapse of his earlier symptoms. Instead, it turned up positive,” Gemma told us.
She got truly worried when her son’s symptoms progressively worsened: from hand and leg tremors, slurred speech, and brain fog a week after the positive test, to having trouble standing and walking at the 2–week mark.
“He has had four inpatient stays for evaluation since [his COVID-19 diagnosis], but almost every result has turned up normal,” Gemma told us.
“It was between his fourth and fifth [inpatient] stay that I began to learn about long COVID in kids and realized his symptoms lined up perfectly with published research — what little there was — and other kids’ experiences, and the timing fit. All his neurological symptoms started a week after his positive COVID test. His primary care pediatrician was the first to suggest long COVID while we were at home,” she added.
‘His anxiety and stress are caused by his symptoms, not the other way around’
Despite her son’s positive test result and even though he experienced so many debilitating symptoms, Gemma still heard from various doctors that her son could not have had COVID-19:
“When we came back […] for [his latest] inpatient stay (his fifth in 2 months, four since [the positive test result], his blood tested negative for [SARS-CoV-2] antibodies. Several doctors argued he never had [COVID-19], despite his symptoms at the time of his positive test, known exposure to multiple cases in the household, and the timing of his complications; I showed them the research from Mount Sinai Hospital in NYC that 2 out of 3 of adult long haulers test negative for [SARS-CoV-2] antibodies.”
Many of the doctors that Gemma consulted told her that her 9-year-old’s symptoms were the effect of stress. In-between hospital stays, she did her best to care for her son in a home setting, but this was not enough.
As time went on, her son gradually lost mobility and had to use a wheelchair, until he found it too difficult to do even that:
“Just the effort of getting to and from appointments was exhausting for him, and he continued to worsen over the weeks we spent at home. He went from running around the yard in mid-February to using a walker to a wheelchair, then became so weak he could barely use the wheelchair.”
While her son is doing well in his current inpatient rehabilitation stay, being separated in this way is taking its toll on the entire family, Gemma told us.
Even in rehab, however, Gemma is uncertain whether her son’s care is what he exactly needs to recover from long COVID. “[T]here is definitely still tension,” she said.
“The team here is taking a very traditional rehab approach, but there is research suggesting long COVID acts more like chronic fatigue syndrome; exercise intolerance is a key feature of both,” Gemma explained.
She went on to say that “it’s hard to find the line between enough rehab to help restore function, but not so much that [my son] will feel worse.”
“And while cognitive behavioral techniques, such as ‘your body can do hard things’ and ‘you will get a little better every day’ have their place, there’s a danger of ignoring or belittling the very real physiological things my son is experiencing,” Gemma noted, adding:
“We have both felt gaslighted in conversations with our [healthcare] providers, more than once. His anxiety and stress [are] produced by his symptoms, not the other way around.”
In her talk for the BMJ webinar, Dr. Whittaker noted that the symptoms of COVID-19 and particularly long COVID in children can express differently compared with adults. She called for more research into the specific ways in which COVID-19 can affect children.
The accounts that MNT received from the parents of long hauler children also emphasize the need for a better age-specific understanding of COVID-19 and post-COVID syndromes.
Eliza’s daughter — now aged 10 — was 9 when she first started feeling ill. At the end of March 2020, she developed an “extremely painful body rash” and started experiencing constant headaches, cracked lips, vision disturbances, and fatigue, among other symptoms. At this point, she had not had a COVID-19 test.
Eliza sought medical help for her daughter a few days later, but the doctors she consulted were stumped.
“[We] saw five doctors on four visits, were referred to children’s A&E [emergency department], all within 10 days” from the development of these symptoms, she told us.
“It felt scary, as it was just so strange that none of the doctors had seen a rash like it before, and they didn’t really know what to make of it,” Eliza said.
Although her daughter was in pain for weeks, Eliza — who lives in the U.K. — explained that she could not seek further medical assistance for a while, as the country’s National Health Service (NHS) was overtaxed with the increasing number of COVID-19 cases.
Her daughter’s condition, however, kept getting worse. In November 2020, she started limping and had swollen lymph nodes and other symptoms that led to her readmittance to A&E.
In February 2021, doctors in the pediatrics department told Eliza that her daughter might have PIMS. “I was shocked,” Eliza told us.
“I don’t think it really sank in until we got home that it meant [my daughter] must have had [COVID-19] prior to the end of March 2020. I was disappointed that it was too late to do antibody tests, but as she was well at the time, I wasn’t overly concerned by her intermittent mild symptoms.”
In February 2021, her daughter’s optician “was shocked and concerned” to see that her daughter’s eyesight had severely deteriorated within a 3-month span.
As of March 2021, Eliza’s daughter has started re-experiencing severe fatigue, skin sensitivity, painful rashes, and headaches. She also developed indigestion and loss of taste and smell — all of these being new symptoms.
Accessing care can be difficult and exhausting
“This time, it felt frustrating realizing that we were back at square one and that still no one had any answers, and nothing could help the hours of severe pain she was enduring. It is also very concerning not knowing when the relapse would end,” Eliza told MNT.
Like Gemma, Eliza said that some doctors suggested that her daughter’s symptoms might be due to anxiety. During her daughter’s latest symptom relapse, their family doctor “was concerned and referred her to a long COVID clinic.”
In the U.K., over 60 specialist clinics now offer recovery help to people experiencing ongoing COVID-19 symptoms if they receive a referral from their doctor.
However, while Eliza’s daughter received this referral, her experience at the clinic was not what they had hoped for:
“[The] hospital did not believe her [when she described her symptoms]; [they] put it down to anxiety. I complained. We then received an apology, a prescription for the drugs recommended by the General Pediatric Consultant, were referred to Pediatric Physiotherapy and our appointment reopened with General Pediatrics.”
Rachel, also from the U.K., told us that her 10-year-old daughter has been unwell with post-COVID symptoms since October 2021.
“She was previously extremely active, competing in dance and gymnastics and also doing tae kwon do,” Rachel told us. Yet her usually active daughter has been unable to participate in the activities she normally enjoys due to her ongoing symptoms.
“Until the last few weeks, she’s struggled to even walk up the stairs at home — her worst symptoms being stomach pain, nausea, extreme fatigue, and breathlessness,” Rachel told MNT.
Like the other contributors, Rachel also struggled to access help for her daughter, despite repeated and insistent attempts. When she did receive support, this did not seem to help improve her daughter’s symptoms:
“Firstly [we] went to our [family doctor] — sometimes twice a week. Didn’t get any help, [they] just [told us] that it sounded [like something of a] viral [nature]. When stomach pains persisted, they prescribed medicine; but no relief. They changed medicine — no relief still.”
Rachel believed her daughter’s symptoms were consistent with long COVID, but the doctors she was able to speak to disagreed. Eventually, one specialist suggested that her daughter undertake an antibody test to confirm she indeed had COVID-19.
The test result came back positive, and an X-ray scan also revealed that Rachel’s daughter had sustained lung damage — even though cough had not featured among her symptoms.
After undergoing further tests and evaluations, the 10-year-old received a long COVID diagnosis and was referred for care to the chronic fatigue team.
Currently, Rachel said, her daughter has to sometimes “[use] a wheelchair to go out for fresh air,” but she has “[m]anaged to gradually increase from not being able to walk up the stairs to a 12-minute afternoon walk.”
For the moment, she cannot manage full-time school hours due to her symptoms, we also heard.
Rachel would like “[a] lot more done looking at [potential] treatment[s] — especially in children, as it is extremely hard for them to access [specialized health] services, especially if they are younger children.”
Jane, from Arizona, told us that her 15-year-old son has had long COVID symptoms for the past 13 months.
She was unable to secure a COVID-19 test for her son when he first developed symptoms, she told us. When she did manage to access a PCR test, over 8 weeks had passed since the 15-year-old had first started feeling unwell. The result came back negative.
“Likewise, the covid antibody test, taken 3–4 months from onset of symptoms, came back negative — I was told that antibodies are not necessarily present after a few months. So there are no confirming blood tests,” Jane said.
“But by mid-to-late-summer, after the neurologist and infectious disease specialist had ruled out all the known conditions related to my son’s symptoms, knowing that we’d been exposed to people from China, northern Spain, and elsewhere [in a work environment] and, having read about others’ experience with long COVID, I became convinced that long COVID was my son’s correct diagnosis.”
At the 13-month mark, Jane’s son is still experiencing fatigue, brain fog, states of nausea, and headaches. He also has insufficient weight.
Jane describes their search for medical support as “a nightmarish year-long saga.” She first consulted a pediatrician, who put her son’s symptoms down to the flu.
Then she sought the opinion of an infectious disease specialist, who ran some blood tests, and suggested that her son might have valley fever — a fungal infection that, Jane says, is common in their area.
An isolating, traumatizing experience for children and parents
Later tests indicated that valley fever was not the correct diagnosis. “By this point,” Jane told us, “my son had started having seizures, which began with an involuntary tremor in the shoulders, so I immediately made an appointment with a pediatric neurologist.”
“By mid-spring, 2020, as bizarre and varied symptoms relentlessly racked my poor son’s body, I was beginning to feel like I was in one of those nightmares where you are hanging off a cliff, grasping at moving clumps of earth to try to keep from falling — in this case, falling into a hopeless state where I would be unable to help my son.”
Jane and her son went to see a new pediatrician, showing him the daily journal they had kept of her son’s ongoing symptoms. Yet the doctor — as Gemma, Eliza, and Rachel also experienced when seeking care for their children — said that the cause was likely “psychological.”
This experience, Jane told MNT, “profoundly […] affected [her] trust in the medical profession.”
Jane also sought the opinion of another pediatric neurologist and a pulmonologist. However, their diagnoses and ensuing prescriptions did not help with her son’s symptoms and, in some cases, even made them worse.
“I am untrained in medicine, yet I feel that I’ve not only been on my own to try to diagnose and treat my son, but that I’ve actually been misled by several of the doctors we saw, and given [medications] on two occasions which exacerbated [my son’s] symptoms,” she went on to say.
“After these negative experiences with medications, along with the many blood tests, imaging, etc., my son has suffered medical trauma,” Jane added.
To help her son feel better, she eventually looked into holistic alternatives, and her 15-year-old tried red light therapy, anti-inflammatory diets, and breathing exercises, all of which appear to have helped to some extent.
Jane also mentioned that her son had found refuge and companionship through video games during this difficult period.
“[S]trange to say, online video gaming has been an excellent method of coping, socializing, and individuating despite pandemic isolation,” she told us.
The reason that some children — as well as some adults — experience ongoing symptoms of COVID-19 for weeks and months after the initial infection with SARS-CoV-2 remains unknown.
In adults, some researchers have speculated that long COVID symptoms may be due to the persistence of the active virus in the system, reinfection with either the same or a new SARS-CoV-2 variant, issues with immune response, or a preexisting condition such as chronic fatigue syndrome.
Some even mentioned that post-traumatic stress following the initial illness could play a role.
However, the factors that lead to children and adolescents experiencing long COVID may differ from those that predispose adults to this phenomenon.
Drs. Morrow and Malone, from the Kennedy Krieger Institute, told MNT that, while the causes of long COVID in children remain unknown, researchers have started to investigate them.
“In our pediatric Post COVID-19 Rehabilitation Clinic at Kennedy Krieger Institute, we are seeing children with persistent symptoms after initial COVID infection,” they told us.
“We do not know why children or adults experience these lingering symptoms, or if there are certain risk factors that may predispose someone to develop long-term symptoms. There is active research going on throughout the medical community to help better understand this process, but we currently do not know the answer to this,” Drs. Morrow and Malone acknowledged.
When it comes to severe post-COVID reactions, such as MIS-C, some researchers have speculated that they might be explained by an overreaction of the immune system to a fragment of its spike protein, which allows the SARS-CoV-2 virus to trigger infection in cells.
Nevertheless, all of these theories are yet to be proven.
All the parents who contacted MNT had spoken about how difficult it was to access specialized care for their children.
More often than not, they described their experience as alienating, saying they felt that they had to fill in the role of medical caretaker as well as parent.
For this reason, MNT asked Drs. Morrow and Malone what they thought parents or carers could do to support children and adolescents experiencing long COVID.
“Parents and caregivers can continue to provide love and support to their children by listening to their symptoms and discussing with their pediatrician if they have any concerns,” they told us.
They added that “[p]arents may also want to investigate additional resources, such as the multidisciplinary Post COVID Clinic at [Kennedy Krieger Institute], for a team-based specialty approach to care.”
However, the onus to provide appropriate care remains on trained healthcare practitioners, who — the parents interviewed by MNT emphasized — are not always able to support young patients experiencing these previously unknown syndromes.
MNT asked Drs. Morrow and Malone what they would advise pediatricians looking after children who may have ongoing symptoms of COVID-19.
“We recommend a multidisciplinary and holistic treatment approach, where individual symptoms are addressed in the context of other psychosocial and environmental needs,” they said.
“We recommend starting with environmental and lifestyle interventions, such as optimizing sleep, hydration, and nutritional intake, and providing psychological support to address any comorbid mood concerns with the help of a psychologist as needed. In addition, any activity limitations should be addressed through an individualized exercise program, which can be done in conjunction with oversight from a physical therapist.”
– Drs. Morrow and Malone
Outside of a medical care environment, they said that, when they are able to engage in such activities, “[c]hildren with long COVID can follow the same Centers for Disease Control and Prevention (CDC) guidelines regarding in-person activities as other children.”
“Our treatment approach [at the Kennedy Krieger Institute] involves helping these children return to a sense of normalcy in their lives, which includes the ability to participate in day-to-day activities, education, and physical and extracurricular activities,” they emphasized.
However, the parents who spoke to MNT noted that their children are not always able to participate in such activities because of the severity of their symptoms.
Drs. Morrow and Malone advised healthcare practitioners to address any symptoms that may affect their young patients’ ability to continue their education as normal.
“For cognitive or school-based concerns, consider testing by a neuropsychologist in order to identify specific cognitive or attention deficits,” they said.
“Establish a plan to improve participation in school and determine if any additional supports or accommodations are needed. Medications, additional diagnostic work-up, and referrals to subspecialists are made on a case-by-case basis,” they noted.
However, none of this is enough for the children who experience long COVID, or for their parents.
“I’d like more practitioners to be aware that long COVID is even a possibility in kids. While the doctors at our local children’s hospital have seen cases of MIS-C, they have limited experience with the more insidious manifestations of long COVID, where it’s very often the case that nothing is ‘wrong’ on paper, but the symptoms are completely debilitating and hard to treat,” Gemma told us.
She also emphasized the need for more targeted research into the impact of COVID-19 on children in the U.S.
“I also hope that the few centers in the U.S. that have launched targeted post-COVID pediatric care — there are centers in Omaha, Baltimore, and New Orleans that I know of — will begin sharing their expertise with doctors around the country through publications, seminars, and continuing education,” she said.
Jane encouraged other parents whose children are experiencing ongoing COVID-19 symptoms “not to accept diagnoses from a doctor when [they don’t] fit all the facts.”
She also had a plea for medical professionals: “I beg you to please find the strength within yourself to say ‘I don’t know,’ rather than offering […] incorrect diagnoses, particularly if the diagnoses are outside of your specialty.”
Jane also cautioned that defaulting to a diagnosis of psychological causes, particularly if the doctor does not ” have a […] clinical psychology or psychiatry degree […] is damaging” to patients.
Finally, Eliza told us that her 10-year-old daughter just “wants a breakthrough — she wants something to happen so she can just go back to bring her normal self again.”
“She doesn’t mind if that’s a jab, a tablet, a program of exercise, but she wants all these weird and sometimes agonizing symptoms to go away,” Eliza stressed.
It is all the more urgent to understand the causes of and treatments for long COVID in children, given that it has already taken up so much of their young lives, preventing so many from having a healthy childhood experience.
“[My daughter is] 10 now, it’s been 13 months, over a tenth of her life, probably 20% of her memorable life spent not knowing what or why she has weird symptoms.”
* We have changed the names of these contributors to protect their and their children’s identities.
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