Fran Simpson was the first to get sick in her family, back in early March, with sinus pain, headaches and muscle aches, then a loss of smell and taste. Then her son, 5 years old, said his testicles hurt and he had persistent insomnia. Her daughter, 9, then got a sore throat that moved to her ears — symptoms that then were not recognized as Covid symptoms.
Simpson Googled “loss of smell and taste” and found it to be the most-Googled search in Iran, where Covid had just torn through the country. Yet she had great difficulty in getting doctors to acknowledge that her symptoms were those of Covid.
Now, months later, Simpson herself is not fully well, and her son is “about 70 percent,” and her daughter “about 80 percent,” both with lingering symptoms. And Simpson is on a mission to make sure people know that children can indeed get Covid, and that it can be a very serious health problem.
Simpson, 42, who lives near York in the United Kingdom, is one of five founders of LongCovidSOS. She recently co-wrote an article in The BMJ about patient-led research about Covid in children, saying: “Parents reported that their children experienced fatigue, general gastrointestinal issues, sore throats, headaches, and muscle pain, or weakness. Other symptoms included fevers, nausea, mood changes, rashes, dizziness, breathing difficulties, and cognitive blunting. The findings of this very informal patient-led survey demonstrate that there is a need for further epidemiological data collection, in order to quantify and qualify the existence of long Covid in children.”
Determining how many children have Covid is hard, because not all states keep records in the same age-group bands. Also, as with adults, many children with Covid could not or would not get tested — so their illness may not be fully documented, or may fall into the “presumed positive” band, without a positive test, that bedevils so many Covid patients. Further, medical research has yet to catch up to the fast-moving pandemic, so authoritative medical statistics are lacking.
“I don’t think the reporting of numbers is correct, because the symptoms for kids can look quite different,” said Margot Everitt, of Indianapolis, Ind., in a video interview in mid-October. Her 12-year-old son has been sick with Covid since early July. “I’ve talked to friends who say, ‘my kids have some symptoms, but we’re not going to get them tested, we’re just going to quarantine.’ …Parents don’t want to put their kids through the testing. It’s really horrible. I can relate…But I’m concerned that parents aren’t getting their kids tested, and that they’re spreading it, and their kids are going to suffer potentially long term.”
There was a national narrative in the United States from the beginning that Covid would either kill you immediately or give you a two-week flu-like illness. There was no in-between, according to this narrative, which has since been proven flawed.
In addition, there has been a narrative that “kids don’t get Covid, and if they do, it’s a mild case” — not true for Everitt’s son and for scores of others. ClearHealthCosts interviewed about a dozen parents and children with Covid, and viewed multiple reports on online forums where Covid patients and parents gather to compare notes, in the absence of a large body of medical information.
Headache, followed by nausea and exhaustion
Everitt’s son’s symptoms started with headache, a low grade fever, and a mild cough. His symptoms abated for a short while in early August, then returned, along with nausea and extreme exhaustion. After playing on their neighbor’s trampoline, her son was so fatigued, he was unable to walk around the block the next day. Four months out, he is still ill, and doctors have not been able to help.
“Anytime he does something active, he gets worse,” Everitt said. “I don’t know how he can function the way he used to. … I’m worried about the long term effects. Is this my child’s new normal? Because he can’t function. I mean he can’t live his life like this at 12, you know? He’s like an old man.”
Post-acute Covid-19, or “long Covid,” or “long-haul Covid” is a lingering illness that some people experience after becoming ill with Covid. One common cycle of a Covid infection is thought to be around two weeks (hence the 14-day quarantine period often recommended for people experiencing symptoms). The British Medical Journal defines long Covid as illness “extending beyond three weeks from the onset of first symptoms,” though many sufferers still experience symptoms many months after initial infection.
Commonly reported lingering symptoms of long Covid include extreme fatigue, mental confusion or “brain fog,” and body aches and pains, although the illness presents differently from person to person.
Parallels with other post-viral illnesses
Dr. Leonard Jason of DePaul University has been studying myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS) since the early 1990’s. ME/CFS is a long-lasting disease that can develop in the wake of a virus, such as mononucleosis, much in the way long Covid seems to linger in some people after the initial infection.
Jason and other experts draw many similarities between long Covid and ME/CFS, and existing knowledge on ME/CFS may be used to inform predictions on what to expect from long Covid.
ME/CFS was once thought to be extremely rare, and to affect primarily white, middle class women, but research has indicated that it is more common than initially believed, and that it can affect people of all races, ages, genders and socioeconomic statuses. Jason said in a video interview that it is extremely underreported and underdiagnosed. As many as 90% of people with ME/CFS are never diagnosed, Jason said. “We’ve also found the majority of youth who have this illness are not diagnosed,” Jason said, “and rates are surprisingly high among minorities.”
Somewhat similarly, Covid was at one point thought to primarily affect older people. But time has proven that people of all ages can be susceptible to the illness, as well as to the lingering sickness that remains in some after initial infection. “Long Covid is not just an adult disorder,” Dr. Jason said. “It affects kids just as ME/CFS affects kids.”
Lingering illness following an initial infection can also be seen in some cases of Lyme disease. Lyme disease is an illness caused by the bite of an infected tick. Most cases of Lyme disease can be treated with two to four weeks of antibiotics, but the CDC website notes that some patients can continue to “have symptoms of pain, fatigue, or difficulty thinking that lasts for more than 6 months after they finish treatment. This condition is called Post-Treatment Lyme Disease Syndrome (PTLDS).”
As is the case with long-Covid, it is not definitively known what causes PTLDS in some patients and, as of yet, there is no proven treatment. According to a study by researchers at the Lyme Disease Research Center at Johns Hopkins University School of Medicine, children are less likely to have the condition, but are still susceptible.
Illnesses such as long Covid, ME/CFS, and Lyme disease can be difficult to diagnose, and sufferers can have a hard time finding doctors willing to listen, as their symptoms are not always physically measurable.
“For adults, it can be very hard to rally support for some of the functional problems they have,” Dr. Jason said. “For children, it’s actually worse, because at least an adult can have the verbal skills to kind of begin to make sense out of these complicated healthcare systems, work systems, school systems, as well as friend and family systems. But children, if they’re not in a very protected environment with advocates, could be in a very difficult situation, because they’re confused. And everybody around them is confused as to what’s going on.”
It’s not easy to find parents and children who are patients. The illness itself is exhausting, patients say, and getting care for their children and themselves is difficult — because it is often true that an ill parent has ill children.
Children, Covid and the spread of misinformation
While children and adolescents were once thought to not be in danger from Covid, this has since proved to be false. Although it seems that children catch and transmit the virus at a lower rate than adults, it is absolutely still the case that children can become ill — and even very ill — from the virus, and can play an active role in transmitting it.
In late August, the New York Times cited data from the American Academy of Pediatrics showing that, over the summer, “cases, hospitalizations and deaths from the coronavirus have increased at a faster rate in children and teenagers than among the general public.”
A CDC report published online in late October found that, “during August 2–September 5, 2020, weekly Covid-19 cases among persons aged 18–22 years increased 55% nationally.” The study also noted that, “increases in cases were not solely attributable to increased testing.”
Infection rates appear to be, to some degree, tied to age. Another CDC report “found that Covid-19 incidence among adolescents aged 12–17 years was approximately twice that in children aged 5–11 years.”
Opening up the schools
Some lawmakers have cited the lower transmission or illness rates among children as reasons to open schools. President Trump’s campaign published a video falsely claiming that children were “virtually immune” to Coronavirus. The video has since been taken down for spreading misinformation, but it indicates a very dangerous way in which false beliefs about the virus are spread to the general public.
“Honestly, I am beside myself as I see the case numbers escalating throughout so much of the country,” one mother, who spoke on condition of anonymity, wrote in an email to ClearHealthCosts in October. Her 14-year-old daughter has been sick since March. “Consider that most people really don’t understand what is at stake; they see that the death rates have declined, feel that life must go on, and anticipate no serious consequences for their children.”
Jessica Thomas of Park Ridge, Ill. has two children — a 16-year-old daughter and a 12-year-old son — who both contracted Covid in mid-August. Thomas’s entire family has since been infected as well.
“This is not a blame game,” Thomas said in a video interview. “This is how viruses work. We all understand this. But we are a little bit concerned about the volume of misinformation, especially as we’re sending kids back to school. How can we have a safe plan around school? This is very concerning to me.”
An outbreak in Thomas’s community, she said, can be traced back to a single weekend-long event hosted in August by parents for students entering their senior year.
“It was probably very well intentioned, thinking they’ve missed so many things, let’s try to help them out,” Thomas said. “We found out about this after the fact, as my daughter’s only a sophomore in high school. Our community positivity rate was around 3% at the time, then all of a sudden it reached upwards of 9-10%very quickly, like in a matter of a 10-day span. That is also within the time when we all became infected. So to suggest that kids have very limited play in the spread of Covid is very short-sighted. That has not been our experience at all. And both of my kids were very much symptomatic.”
Thomas’s daughter, who has a preexisting condition, ended up having to be hospitalized under the care of a pediatric pulmonologist. She is doing better these days, but has not returned to previous levels of physical activity, Thomas said.
Immense frustration, and a sense of helplessness
In all of the families ClearHealthCosts spoke with, parents admitted to feeling frustrated and helpless in the face of their children’s illness. Doctors are often unhelpful, and most tests that the children undergo come back negative — or they can’t get tested at all, which is common throughout the nation. There is also a pervasive fear of not knowing if or when their child will be able to return to their previous levels of functioning.
Ava McKinney-Taylor, 16, of Stone Mountain, Ga., has been sick since early March. She and her parents were among some of the first cases of Covid in Georgia. Ava’s mother, Ziah McKinney-Taylor, said doctors simply would not take them seriously. “The doctors rolled their eyes when I said it was Covid,” Ziah McKinney-Taylor said in a video interview with her and her daughter. “Only one nurse tech put a mask on because she was freaked out at how sick I was.”
Ava McKinney-Taylor’s first symptoms were extreme fatigue, headache and a slight fever. These symptoms have lingered, and new ones have continued to crop up as time progresses.
“It feels like every month I get a new set of symptoms,” Ava McKinney-Taylor said. “[My school friends] said ‘you’re leveling up!’ Because in July I gained nausea and lack of appetite, and then in September, I gained really heavy, heavy brain fog. Like, I just cannot for the life of me make words and sentences. This month, I’ve gained all kinds of balance problems. Like, I cannot walk through the house without feeling the whole world tilt. So every month I get a new set of things. But at the beginning, it was pretty much just solidly the exhaustion, and headaches pretty consistently.”
In mid-July, Ava McKinney-Taylor and her mother both began experiencing racing heart rates — which they now know is called tachycardia.
When the doctors say it’s depression
The McKinney-Taylors were repeatedly told by doctors that Ava’s symptoms were due to depression, that she was sad and had no energy because she missed her friends. Other doctors said it must be mononucleosis, even though Ava McKinney-Taylor had been quarantining in her house for several months at this point and had no exposure to others from which she could contract mono.
“Depression doesn’t give you a fever and nasal inflammation and exhaustion,” Ziah McKinney-Taylor said, and Ava McKinney-Taylor says that she was not particularly depressed during this time.
“I think the hard thing is that some doctors are really with it, and understand,” Ziah McKinney-Taylor said. “They are listening to what we’re saying and keeping up with the new stories that are coming out. And then some doctors are still rolling their eyes and just not listening…the dichotomy that I’ll encounter in doctors within one week is still surprising to me.”
Another difficulty is that, as with ME/CFS and long Lyme, long Covid symptoms are not always particularly measurable. “I don’t have as tangible of symptoms as my mom does,” Ava McKinney-Taylor said. “And so it’s been hard. There’s not really anything for them to examine, and if they’re not going to listen to us, which I’ve had very few of them do, then there’s just not a point to going in or scheduling a video call or anything.”
A 14-year-old’s daily fevers, from March to October
A mother of a 14-year-old girl who spoke on condition of anonymity wrote to ClearHealthCosts about her daughter, who has been sick since March. After an initial illness, including a sore throat, cough and fever, the child’s symptoms all went away, except for a low-grade fever. This slight fever, ranging from 99.8 to 102.2 degrees, has persisted since then, and even now, seven months later, the girl still experiences daily fevers that are “highest in the middle of the day and afternoon, fading to a minimal level on most nights,” her mother wrote in an email.
Starting in May, the mother says her daughter began experiencing severe intestinal pain, and extreme fatigue. These symptoms, the mother noticed, were more severe around the time of her daughter’s period. She is far from the first to have noticed an increase in symptom severity while menstruating — read ClearHealthCosts’ reporting on Covid and reproductive health here.
Throughout this entire process, the mother says she has taken her daughter to the emergency room and to infectious disease specialists multiple times. Her daughter has undergone many tests, including chest X-rays, blood tests, ultrasounds, and more — the tests are always negative.
“The isolation [my daughter] feels in her situation is considerable,” the mother wrote in an email. “At times, she tells me, she fears she will never recover, never return to normal. What to tell her? The timeline by which these persistent covid symptoms evolve is not known to anyone. Hers wax and wane unpredictably; I’ve charted them in three softwares and am unable to detect a clear pattern. Yet I feel it is my job to remain resolutely hopeful, as I genuinely tend to be — but in truth, of course, I don’t really know anything.”
Fran Simpson, the British mother of young children with Covid, said that such thoughts have fueled her work to bring awareness of the effects on children, while taking care of her kids is of utmost importance.
“It’s really hard,” Simpson said, “because there’s nothing I can do. We just have to kind of go with it and sit it out and hope it goes away again. And we don’t know where the finish line is; whether there is a finish line or whether they will just carry on, up and down forever.”
When Covid turns life-threatening
For some children, what starts as a Covid infection can quickly turn deadly. Charlie McPherson, 10 years old, of Newcastle upon Tyne, in England, first experienced excruciating stomach pains in May. According to his story published in the Sunderland Echo, although McPherson tested positive for coronavirus, doctors attributed the pain to appendicitis, and removed his appendix.
McPherson continued to feel unwell after being discharged, and his mother, Claire Gowland, took him back to the hospital where he was soon struggling to breathe on oxygen.
“I think it was mother’s instinct,” Gowland told the Sunderland Echo. “I just knew that something was just not right with Charlie and I just couldn’t bring his temperature down.”
Charlie’s father, Paul McPherson, a member of the Covid-19 Long-Haulers Discussion Group, a Facebook group for Covid patients, described his son’s experience in an exchange of messages with ClearHealthCosts on Facebook.
“My son developed complications leading to what the U.K. have called PIMS-TS,” he wrote. “[It is] very similar to Kawasaki disease. My son battled for his life for a week. First 48 hrs touch and go. His heart and lungs were attacked, etc. Luckily he pulled through. He has been left with a slight leak in his heart valve. Something they expect to correct itself as he is so young. I tested positive on the 27th April. I’m still suffering now. My son is fine though.”
Pediatric Inflammatory Multisystem Syndrome Temporally associated with Covid-19 (PIMS-TS) was first reported in April, 2020, according to The Lancet. This syndrome, a study published in the PubMed Central Journal said, has “overlapping features of Kawasaki disease and toxic shock syndrome.”
The syndrome, which is also interchangeably referred to as Multisystem Inflammatory Syndrome in Children associated with Covid-19 (MIS-C), “can lead to shock and multiple organ failure requiring intensive care,” the Lancet wrote. It develops in some children following a Covid infection although, the Lancet wrote in a separate piece, “the association between MIS-C and COVID-19 is still unknown.”
Children with this condition exhibit serious inflammation throughout the body, according to a piece published on the website of the Royal College of Paediatrics and Child Health (RCPCH). Inflammation is a normal immune system response to infection, but the immune system can sometimes go into overdrive and attack the body.
The RCPCH wrote on their website. “If untreated, the inflammation can cause tissue damage, organ failure or even death.”
Although symptoms of PIMS-TS/MIS-C resemble those of Kawasaki disease in some ways, including a high, lasting fever, inflammation and gastrointestinal issues, Kawasaki tends to affect children under five years old, while PIMS-TS seems to affect older children and teenagers — there are, as of yet, no reported cases in children under the age of seven. According to all sources, PIMS-TS/MIS-C seems to be extremely rare, although exact numbers are difficult because the syndrome is so new, possibly underreported.
What you can do
We never give medical advice. If you have questions about your symptoms, take them to your medical professional. There seems to be mounting evidence that Covid can affect many of the body’s systems in sometimes mysterious and conflicting ways, and that some doctors have not caught up with the pandemic. But here are some things to consider.
- Document your symptoms, and your child’s symptoms, for yourself and your medical professionals, so you have an accurate reflection of your experiences.
- Join patient groups to compare experiences. Here are several: the Body Politic Slack Group and the Covid-19 Long-Haulers Discussion Group, as well as the Survivor Corps Facebook group.
- Medical science seems not to have caught up to the situation on the ground as of October 2020. You may find that your doctor pushes back on the idea that patient knowledge is very important in the case of an onrushing new illness like Covid, or you may find that your doctor welcomes your expertise. In any case, advocate for yourself.
- Show this article to your doctor. By doing so, you may be able to contribute to their knowledge of the topic.
- Show this article to your friends or others who might find it useful or illuminating. Again, maybe you can contribute to the body of knowledge on this topic.
- Email the reporters ( phoebe@clearhealthcosts.com and (jeanne@clearhealthcosts.com) to let them know if there are things they are missing.
- You may want to contribute to a study about the topic. Here is a web page listing a number of studies.
