Fourteen-year-old Indiana Evans is a promising dancer from Hertfordshire, southern England, who was doing 16 hours of practice a week on top of school before the coronavirus pandemic hit. Indiana fell ill with a cough in early March, said her mother, Jane Evans. Although she didn’t have any other coronavirus symptoms, her parents kept her home for two weeks in line with government guidance. She was never ill enough to be hospitalized, her mother told CNN. Nonetheless, the teenager – who planned to audition for prestigious dance schools – can now barely manage a trip to the supermarket. Like many others who fell ill in the early weeks of the pandemic in the UK, Indiana was never tested for the coronavirus. But her mother said doctors have diagnosed her with post-viral fatigue post-Covid. She is one of a number of children who appear still to be suffering symptoms related to the coronavirus months after first falling ill, according to accounts from their parents. While awareness is gradually growing with regards to “long Covid” in adults, much remains unknown about any potential long-term impact in children. Parents whose children have been battling symptoms as diverse as fatigue, breathlessness, chest pains, diarrhea and “Covid toes” for weeks say there is little information available to help guide their recovery – a situation all the more worrying given the imminent return to school for many. In the United States, President Donald Trump has called for schools to reopen despite concerns over the rate of community transmission in many areas. And he was censured this week for comments during a “Fox & Friends” interview in which he falsely claimed that children were “almost immune” to the virus. While Covid-19 symptoms are generally milder in children than in adults, with a much lower likelihood that they will require hospitalization, the virus can still pose a risk to children’s health – a point stressed by Dr. Anthony Fauci, the director of the US National Institute of Allergy and Infectious Diseases (NIAID). A few have even died. Additionally, a tiny proportion of children and teenagers have been hospitalized in the US, United Kingdom, Italy and elsewhere with a rare condition known as multisystem inflammatory syndrome in children, or MIS-C, a potential complication following Covid-19 infections. ‘There’s so much unknown’ “Covid in children falls into two categories really – the primary infection with the virus seems to be a largely benign event in children, except for some tiny numbers where there’s a pre-existing condition,” said Athimalaipet Ramanan, Honorary Professor of Paediatric Rheumatology at the University of Bristol in England. “But what is an issue in a small minority of children is hyper-inflammatory syndrome, where they get quite unwell and get admitted.” Ramanan said he had not yet seen cases of children with apparent longer-lasting mild Covid symptoms. “Probably they are starting to trickle through the primary care system,” he said. “I think we will know more about this in the months to come.” One challenge is that it’s not yet clear how attributable such symptoms are to the coronavirus, he said. Another is that since children were very mildly affected, they were not a priority for testing. “We will have to work to ascertain if these are incidental findings of the coronavirus era or if these are related to the coronavirus,” he said. Some parents have turned to online networks such as the Long Covid Support Group as they try to make sense of a baffling array of symptoms that don’t fit with the “typical” characteristics of the disease but continue to trouble their children. CNN spoke by phone with the parents quoted in this story after making contact through such support networks. Indiana initially seemed better after a week – but 10 days later, started to feel exhausted, her mother said. At first, the teenager tried to keep up with schoolwork and dance practice online but her symptoms seemed to worsen after doing any exercise at all. In the following days, Indiana began suffering migraines and seeing flashing lights. “Her face all swelled up, her eyes swelled up, she got a rash all over her body,” said Evans. She contacted the doctor after Indiana began getting chest pains and palpitations but was told her daughter just needed to rest, she said. Eventually Indiana was referred for hospital tests to rule out other problems, Evans said. “All the results came back absolutely fine, nothing highlighted in the chest x-rays or blood tests even though she was getting a really tight chest,” her mother said. She will shortly start one-to-one rehabilitation classes to aid breathing and muscle strengthening. Evans remains uncertain what lies ahead for her formerly “extremely active, very healthy” daughter, who’s due to join a new school in September. “In our experience it seems like an evolution. The virus evolves in the body from one thing to something else. You’re okay and then something else happens,” Evans said. “There’s so much unknown. We don’t know how long this will last for, we don’t know what will happen if she starts exercising again.” Evans, like other parents who believe their children are suffering long-term effects of the coronavirus, is also worried that Indiana could be denied healthcare support because she hasn’t had a positive test. “We just have to take each day at a time,” Evans said. “I think the hardest thing for her is not knowing what’s going to happen in the future. She’s not able to dance, she’s very aware of that – and it was a huge part of her life before.” ‘A rollercoaster for the whole family’ Birgit, from East Sussex in southeast England, said her previously active seven-year-old son is still fatigued, has lost weight and can’t run far without being noticeably out of breath, four months after contracting suspected Covid-19. She and some other individuals in this article asked to be only partially identified out of privacy concerns. Birgit said she, her husband and their son got sick in mid-March and are all still recovering. “It’s been a rollercoaster for the whole family,” said Birgit. Her son’s symptoms started with a temperature, diarrhea and conjunctivitis, she said. “He had blotchy skin and became quite unfocused. During the next few weeks he had a real loss of appetite – which he still has – became quite weepy, and he’s normally a very happy, active little boy.” His symptoms, which were intermittent, also included fatigue and trouble swallowing, she said. “I’m also very concerned about his emotional well-being, especially with us having been ill for such a long time and having had relapses.” At one point, she said, things got so bad that she and her husband drew up a legal document regarding care of their son if they both were hospitalized or worse. “Having that plan reassured him but it’s a difficult conversation to have with a seven-year-old,” she said. Birgit said she got little support from her general practitioner or the National Health Service’s 111 advice service. No one in the family was tested, although doctors told her they believed she had Covid-19 and the letter signing her off from work says likely Covid-19, she said. “It’s the uncertainty – I wonder where this is going and for my little boy, what will this mean for him with sports,” she said. “I don’t want to be silly, at least all he has is shortness of breath, but I don’t know what that means going forward. Should we have his lungs checked out? There’s so little guidance.” Charlotte, from Buckinghamshire, southern England, also believes her son suffered lingering effects of Covid-19, although he seems fully recovered now. Ten-year-old Freddie fell ill in March and was given an inhaler and steroids after experiencing a cough so bad he had trouble breathing, she said. He recovered in about a week but then had a rash, followed by diarrhea that lasted for several weeks. Charlotte had a negative antibody test but her son has not been tested, she said, adding that his symptoms were similar to her own. ‘They are scared to return to school’ Jen Stefanic, who lives in a rural county in the northwestern US state of Idaho, said her three children, a 12-year-old boy and girls ages 10 and seven, had all experienced waves of various symptoms since late May. All were normally very active and healthy. The symptoms include headache, low fever, aches and chills, joint pain, rashes, acid reflux, diarrhea, insomnia, loss of taste and smell, cough, wheezing and swelling of hands and feet, Stefanic said. No coronavirus tests were available, she said, but the family doctor told her to assume they had all had the virus. She and her husband first fell ill in March. “I truly think that this virus has changed things in each of us,” she said. “My heart aches for them as they are scared to return to school.” Another mother in the English Midlands, who asked to be known as Jane, said her three boys were now recovered but that she continues to suffer debilitating symptoms after all becoming ill in March. The eldest, who has just turned 16, had Covid toes – where his toes and heels turned a dark purple color – for three months but otherwise has felt fine, she said. One of her 11-year-old twins had a sore throat, tight chest, abdominal discomfort, Covid toes and continues to suffer daily nosebleeds, she said. He has only reported feeling more normal again since mid-July. The other twin suffered joint pain in his knees and hips, followed by intermittent bouts of sickness and diarrhea over a period of several weeks, she said. Doctor: No concrete data yet Researchers have so far focused their attention on the small number of children who have been hospitalized with MIS-C, rather than those suffering lingering symptoms after suspected coronavirus exposure. Dr. Nathalie MacDermott, a National Institute for Health Research academic clinical lecturer at King’s College London and London hospital physician, told CNN she had seen more cases of children affected by MIS-C than acute Covid respiratory illness. “At the moment there’s no concrete data that’s been published in relation to children and long-term problems, but that’s because we are still fairly early on and children haven’t been so badly affected,” MacDermott said. In addition, because of the relatively small number of children involved, studies may need to look at children in multiple countries, she said. “It’s certainly possible that children may experience the kind of problems we are hearing about in adults such as long-term fatigue,” she said. “From a clinical perspective we are only really seeing those children who were admitted to hospital so it’s very hard to know what’s going on in the community.” MacDermott recommended that parents of children with “significant ongoing symptoms” seek help through their primary care providers to ensure other possible underlying conditions are not missed. “It’s important that people realize that pediatric services are now fully functioning,” she said, adding that the absence of a positive test would not exclude children from getting post-Covid care.