As we learn more about COVID-19, the accepted narratives about it are constantly being challenged. Initially it was said that children aren’t seriously affected by the virus. But while acute infections in children do tend to be milder, there is emerging evidence that, like adults, they are at risk from persisting symptoms – in other words, long COVID.
The Office for National Statistics estimates that around 13%-15% of children with COVID-19 have symptoms that last for more than five weeks. In Italy, a recent preprint (an early piece of research yet to be reviewed by other scientists) suggests that more than half of children with COVID-19 have at least one persisting symptom over 17 weeks after being diagnosed. Among them, 43% reported being impaired by their symptoms during daily activities.
Guidance for supporting people with long COVID has been published, but it acknowledges that understanding of how the condition presents in children is limited. Knowledge about this is, however, growing all the time. Here’s what we know so far.
How long COVID affects children
Research on long COVID in adults has revealed a long list of symptoms. Early evidence suggests that many of these are also shared by children. In the Italian preprint, symptoms often found in adults – such as fatigue, muscle and joint pain, headache, insomnia, respiratory problems and heart palpitations – were reported frequently in children.
A separate, larger preprint – which surveyed the parents of children with long COVID, predominantly in the UK and US – found similar results. Across a sample of 510 children, tiredness and weakness (87%), headaches (79%), abdominal pain (76%) and muscle and joint pain (61%) were common. Gastrointestinal symptoms were also reported relatively frequently, as were skin complaints such as rashes.
This paper also suggests a number of neuropsychiatric features may manifest in children with long COVID: 61% of children had trouble concentrating, 46% difficulty remembering information, 33% difficulty processing information and 32% trouble finding the right words when speaking. Unexplained irritability was common too, and may be associated with ongoing inflammation in the brain, though this could also be an understandable response to being unwell.
While many children develop long COVID as an immediate consequence of the virus, the international paper suggests that for some there may be a hiatus between the end of the acute infection and the start of long COVID. One in five of those surveyed had a period of wellness after their infection. The Italian paper also suggests that COVID-19 can have long-term effects in children who are asymptomatic or have minimal symptoms.
Guidance for parents and teachers
The pandemic has affected children and young people in many ways. Some have missed a year of school. Children’s mental wellbeing has also suffered, and a reduction in physical activity and fitness is a health risk too. Importantly, children and young people are reported to be fearful about their future. If long COVID is added to this mix, the challenges are immense.
Parents should therefore try not to push children with long COVID to do too much, particularly as exercise seems to contribute to relapses. If you think your child has long COVID, keep notes of symptoms and patterns. You can then take these to consultations with medical practitioners. It may be that you are more aware of long COVID in children than your GP. You can also seek support and information from advocacy groups such as Long Covid Kids.
With children in the UK now returning to school, it’s vital that teachers are aware of the existence of long COVID. In particular, it shouldn’t be left to parents to provide information to teachers about how their children are affected.
Both should understand that long COVID needs to be considered as a disability of uncertain duration that may last months. Surveying suggests some children have had symptoms for a year that are still ongoing. The symptoms themselves may be diverse and can fluctuate, and may appear months after a coronavirus infection, which could be asymptomatic.
Note that because long COVID can cause a variety of physical symptoms, it may lead to school absences. These, together with neurocognitive effects, such as trouble processing information, poor memory and speech difficulties, may affect academic progress.
While we don’t presume to tell schools how to respond to the challenge of long COVID in children, given all of the above, we do have some advice. We believe each child should be assessed as an individual, with individual needs. Because of their symptoms, children with long COVID may require personalised timetables. These could include remote learning, the provision of a room for a nap if needed, and observation and support during PE lessons, with modifications to take account of fatigue. But remember: no one solution will fit all children.
Schools should also know how to arrange onward referrals to appropriate services, such as children’s long COVID clinics (if set up) or Child and Adolescent Mental Health Services (CAMHS) should anxiety, depression or other mental health symptoms arise that need a specialist approach.
Finally, schools may also need to provide support to families. Parents may struggle managing a child with long COVID, and other family members may also have it. It may be helpful for the school nurse to liaise with the child’s GP (after gaining parental or carer consent) about particular symptoms reported, impact on school attendance, mental health symptoms or any safeguarding concerns.
Above all else, school procedures should ensure that children and their families are dealt with and supported compassionately in the face of what is a difficult and uncertain condition.
We would like to acknowledge Dr Karrie Fehilly, consultant child and adolescent psychiatrist and medical lead CAMHS at the North Middlesex Hospital, London, UK, for her comments on this piece. Thank you, also, to the children, parents and teachers who have shared their concerns and stories with the authors.
Amali Lokugamage is on the board of directors of the International MotherBaby Childbirth Organisation. She is a company director of a small publishing company called Docamali Ltd.
Frances Simpson is affiliated with the Long Covid Kids online support group.
Carolyn Chew-Graham does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.