The kids are not alright: Data suggests 10% of children with COVID-19 become "long-haulers"
Eleven-year-old Noah Symons feels like "someone started a fire and then threw my hands into it." He has felt this way for three months, he says, and his feet feel like they are on fire too. Symons been trying to go to school and stay active, but any extra effort results in fatigue and painful flare-ups.
Meanwhile, over the past five months, 16-year-old Lane Perkins has experienced debilitating headaches, severe fatigue, and difficulty concentrating and retaining information. She lost her spot on the traveling softball team and dropped a chemistry class.
For the past 22 months, 14-year-old Anastasia Athienites has had "Covid toes" — a painful blistering rash on her feet. Not long after the rash appeared, she began having heart palpitations, migraines, and cognitive issues.
In the past 23 months, 16-year-old Kitty Mcfarland has battled intense fatigue, an increased heart rate, tightness in her chest, the ability to be in an upright position, severe abdominal pain, headaches, and major cognitive and memory struggles. She couldn't talk properly and could barely get out of bed for the first 8 months of her ordeal, and had to crawl from her bedroom to the bathroom.
The four kids from Colorado, Tennessee, Massachusetts and the United Kingdom have a few things in common: namely, they all contracted a mild case of COVID-19 weeks before the onset of their symptoms, and have all now accepted a diagnosis of "long COVID." Their situations are a testament to COVID-19's indiscriminate nature — and a rebuke to the myth that COVID-19 is always mild in children.
"We are definitely seeing long COVID in children," said Dr. Amanda Morrow, Co-Director of the Kennedy Krieger Institute's Pediatric Post-COVID-19 Clinic in Maryland. "It does exist. And it is impacting day-to-day lives significantly."
Because the data is preliminary, estimates thus far vary wildly on the prevalence of what is now known as "long Covid" in children and adolescents.
Available studies have reported wildly varying numbers on the proportion of children who suffer long Covid, ranging from 0.8% to 66% of total pediatric COVID-19 cases.
"We don't really know a whole lot," said Dr. Sindhu Mohandas, a pediatric infectious diseases specialist at Children's Hospital Los Angeles. "We are just starting to learn over the past few months what long Covid in kids is."
Recognizing its existence, Mohandas said, has been a big advance.
While there is no official definition of pediatric long Covid at this time, the parameters typically include the persistence (or return) of symptoms 12 weeks following the initial infection. Some criteria look for new or persistent symptoms 30 days out from the acute infection. Another key is ruling out of alternative medical explanations — making the process of diagnosis lengthy and requiring a multi-disciplinary team.
However, there is now growing consensus that somewhere around 10 percent of COVID-19 cases in kids turn into long Covid — at least according to the data collected for primarily pre-omicron and pre-vaccine cases.
At this time, most of the studies come from other countries.
In September 2021, the Israeli Health Ministry announced the results of a survey showing that 11.2% of kids reported symptoms of long Covid.
"No one is certain exactly how many people who've had COVID-19 end up being long haulers," wrote Johns Hopkins University School of Medicine Professor of Pediatrics Dr. Peter Rowe on the American Academy of Pediatrics' "Healthy Children" website.
He continued: "One study showed that as many as 52% of teens and young adults between ages 16 and 30 may experience lingering symptoms 6 months after having COVID. The U.K. Office for National Statistics estimated that 12.9% of children 2 to 11 years of age, and 14.5% of children 12 to 16 years old, still experienced symptoms 5 weeks after infection."
"It will end up being about 10% — is my guess," said Morrow. "We do not know at this point what risk factors predispose children to developing long COIVD. It could be a possible outcome for anyone. We just don't know."
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Dr. Alexandra Yonts, director of the Post-COVID Program at Children's National Hospital in Washington D.C., said based on her knowledge thus far, that yes, as many as 10% of all pediatric COVID cases turn into long Covid.
"My best guess is 10 to 20%" said Mohandas. "It depends at what time you are looking at symptoms." At the four week mark, it may be closer to 20%, reducing after that, she explained. "That's a rough estimate based on limited experience."
There are currently about 10 pediatric long Covid clinic in the United States, including those where Morrow, Yonts, and Mohandas work.
Sammie Mcfarland (Kitty's mother) co-founded "Long Covid Kids" in 2020 - the first U.K.-based international charity for long Covid kids. It started with the stories of seven families.
From there, 300 more reached out, she described.
Today, the group has more than 5,500 families, some with multiple children with long Covid. About 100 to 120 new families are joining every week.
"I suspect, based on what I know — it's around 12% to 15%," Mcfarland said, adding that would be conservative. If she were not being conservative, Mcfarland would say closer to 18 to 20%.
Doctors and researchers are anticipating more long Covid cases stemming from the omicron variant, given the statistical magnitude of the spread, and the increase in pediatric infections.
Much remains to be seen, including the impact of vaccines on long Covid in kids, and whether omicron produces different severity or types of long Covid symptoms.
In Israel, a ward specifically for pediatric omicron patients recently opened. Dr. Moshe Ashkenazi, director of the new ward, told The Times of Israel, "From previous waves we believe seven percent to 10% developed long Covid, but with Omicron, the numbers being infected are so high that even if just 1% of infected children get long Covid, it'll cause more pediatric long Covid cases than Delta."
On Jan. 18, the American Academy of Pediatrics reported more than 981,000 new COVID cases confirmed in children in the United States during the week ending on Jan. 13, representing a 69% increase from the previous week, according to the Academy.
In addition to a consensus on how many kids may be affected by long Covid, other common threads are emerging in the data and in anecdotal experiences.
For one, older children and adolescents appear more at risk of long Covid than babies and young children. Yonts said she is primarily seeing long Covid in the 11 to 17 age range. Mohandas said she's seen the highest prevalence in the 12 to 15 age group.
However, the doctors note an important and concerning caveat: young kids don't have the same ability to communicate what they are experiencing.
"My hypothesis," Mohandas said, on the age range most at risk, "is that I don't think [older children] are more at risk. I think they are more able to voice symptoms."
In addition, Mohandas noted it is easier to notice and track a change in an older child's academic or athletic performance.
Curiously, girls appear to be at higher risk, too.
The majority of children developing long Covid had only mild cases of the initial SARS-CoV2 infection, and were healthy pre-COVID with no underlying conditions. A significant portion had asymptomatic cases.
"All of the kids we've seen have been high-achieving," Yonts said. "Straight-A students, prospective Division I athletes, musicians, artists. They went from super high-functioning to not being able to get out of bed."
There have been reported as many as 200 different long Covid symptoms, with some kids by themselves experiencing 40 or 50 symptoms.
It is now well documented that the SARS-CoV-2 virus can affect nearly every organ and system in the body — and long Covid in kids appears to do the same.
There is more research needed, the doctors say, on the important distinction between damage done directly to organs by the virus, and damage caused by a hyperactive immune system response triggered by the virus.
In her patients ranging from age 2 to 20, Yonts said that "severe, persistent fatigue is the number one complaint."
From various studies, surveys, and clinical experience, the following list comprises the most common symptoms of long Covid in kids:
Fatigue or decreased physical performance, difficulty thinking or concentrating and memory loss (known as brain fog), headaches, dizziness, trouble breathing, loss of taste and smell, sleep disturbance, chest tightness or pain, abdominal pain, fever, mood changes, muscle and joint pain, congested or runny nose, cough, heart palpitations, loss of appetite or weight, and rash.
"There is an extremely diverse array of symptoms," Mohandas emphasized. "Every week we see or hear of something new. Physicians have to keep their mind open to a wide range of symptomatology."
Multisystem inflammatory syndrome in children (MIS-C) is also part of long Covid in kids, but rarer, and not fully understood.
The process of recovery and healing can only start once the experiences of the long Covid kids are acknowledged and validated, Mohandas said. And there is much being done in the way of information sharing, collaboration, and writing guidance and accommodations for schools, businesses physicians, and families.
It's requiring a "holsitic and multidisciplinary approach," Mohandas said, and they are acquiring more and more knowledge and tools to help kids minimize and cope with the physical and mental health symptoms that accompany long Covid.
A big unknown at this time is how long — and for some, even if — kids will recover.
The good news is, the bulk of their patients are improving or recovering, reported Yonts, Morrow, and Mohandas. Of course, they are getting a high level of care to which not many children have access.
Studies suggest most cases resolve within about six months. But there also appear to be a significant number of kids — like Anastasia and Kitty — whose symptoms began with the first wave in the spring of 2020 and persist in some form today.
While there is much more research to be done, new information on the impact of COVID-19 on kids manifests almost daily.
On Jan. 7, the Centers for Disease Control and Prevention published a study finding children and teens are more likely to be diagnosed with diabetes a month or more after their COVID infection, compared to those who did not contract the virus.
"We are getting information in real time as the parent is living through it," Morrow said.
Diagnosis of long Covid is a difficult — and heart wrenching — process.
"There's no specific list of symptoms that lead to a diagnosis," Mohandas said. "There is no blood test to say 'This is long Covid.'"
And ruling out every other medical explanation takes time and evaluations from different specialists, she noted.
Many families report being dismissed and disbelieved by the medical profession.
Being accused of "fabricating" their illness "nearly broke us," Mcfarland said, of herself and her daughter who both contracted COVID-19 in March of 2020 and were bedridden for 8 months once their long Covid symptoms began. They are not yet fully recovered, and she wonders what intervention or treatment might have helped had they had more help in those early months.
"The diagnosis of long Covid in itself is very significant, Yonts said, in no small part by "giving families the space to feel heard and be validated."
Mohandas reported parents in tears at finally being believed about what was happening to their child.
From a doctor's point of view, "It's easy to be dismissive when you don't understand what's going on," Yonts acknowledged. "A lot of us had to learn very quickly how to talk about uncertainty. Some doctors have not adapted and it feels like failure."
The mothers of all four long Covid kids described an endlessly frustrating process of going to new doctors, getting more tests, trying more treatments — only to find they still have very few — if any — answers as to why this is happening to their child, what can make them feel better, and how long it will last.
"Not being able to do anything to make him better has been the hardest thing," said Noah's mom, Sheila Symons. "We keep looking forward to doctors appointments feeling like we are going to find something that helps. The disappointment every time is horrible."
For almost two years, "Kitty has not had the energy or mental capacity to do anything other than get through the day. And that's taken a massive toll on her mental health. And that's also because of her experience being minimized by doctors for more than 20 months," Mcfarland said. Kitty doesn't want to talk to doctors anymore. "She says, 'What's the point? They don't believe me."
Morrow said doctors are also seeing a lot of symptoms of anxiety and depression in kids with long Covid — at this time unclear whether is a symptom of long Covid or a symptom of the chronic pain, brain fog, reduced activity constant fatigue, isolation, and doubt and dismissal from adults.
The Symons family is now transitioning Noah's treatment to pain management, as opposed to taking the pain away. They've seen dozens of doctors and tried everything prescribed.
"He wants to be normal — but now this is getting to be normal," Sheila said.
"He taught himself how to scream on the inside," said Noah's father, Aaron. "Those are his words."
Lane's new symptom "feels like someone is choking her when she tries to swallow," described her mother, Angi Wilson-Perkins. They have an upcoming appointment with a neurologist, but are finding the most support, treatment ideas, and resources in the long Covid groups across social media.
"The brain stuff is really scary. I'm not going to lie," Angi said. "The amount she can't focus or learn. Her memory — she can't recall names of people she sees on a daily basis. Her sense of taste comes and goes. And this swelling thing is really scary. We get shoved from one specialist to another. And are paying for all these tests. And then everything comes back fine. And the doctors say she's fine. Well, clearly she's not."
Anastasia is finding some relief for the migraines but not much for the feet issues, which have also resulted in a diagnosis of Raynaud's disease.
Her mother, Jennifer Athienites, advises other parents to seek multiple opinions from doctors, and go to a major medical institution if possible. She's grateful for the access to care her family has had in the Boston area.
"I want people to know this is real," Angi said.
"It may not affect everyone, but it's going to affect a lot of people. It's like Russian roulette," Angi continued. "You don't know who will be the next person to get long Covid. There's no way to know. People need to understand as a community we need to try to help everyone else out — wear a mask or get vaccinated to stop the spread. It's just going to keep mutating and we are never going to get over it."
"Don't be fooled into thinking kids — your kids — are not going to be the ones affected," Sheila Symons said. "It could happen to anyone."