Exhausting, painful, lonely: The impact of Long Covid on children

Written by: Dr Sue Peters | Published:
Image: Adobe Stock

Tens of thousands of children are suffering with Long Covid. In the first of two articles to help schools support children with Long Covid, Dr Sue Peters considers the impact of this mysterious and often debilitating illness on pupils

Long Covid is the name given to the on-going signs and symptoms caused by the SARS-CoV-2 infection that remain unresolved for four weeks or longer.

Long Covid usually presents with clusters of symptoms, often overlapping, which can fluctuate and change over time and can affect any system in the body (NICE, 2021).

This is the first of two articles and here I will consider the impact of Long Covid on pupils, their wellbeing and their education. In a second article – which you can find here – I will consider how best schools can support pupils who are living with Long Covid, looking at what we might see and how we can respond.

How many children and young people have Long Covid?

We don’t know yet how many children will develop Long Covid but we do know that the number of children with Long Covid is currently increasing. Prevalence figures vary depending on the study and the research methods employed, but according to the Office for National Statistics (ONS, 2022a) there are currently 119,000 children and young people living with Long Covid; 21,000 of whom are still experiencing symptoms 12 months after their initial infection (as of March 2022).

The ONS Covid-19 Schools Infection Survey (2022b) found that since March 2020, 1% of primary school-aged pupils and 2.7% of secondary school-aged pupils met the criteria for having experienced Long Covid, affecting daily life for 12 weeks or more.

These numbers are significant; 2.7% of secondary pupils equates to 1 in 37 – or 27 students in a secondary school of 1,000. Worryingly, these statistics do not yet account for the omicron wave, during which time a large proportion of children in this age group were exposed – as readers of this magazine will well know.

We don’t know yet which children are more likely to get Long Covid, but the data suggests that any child who is infected with Covid-19 can suffer from Long Covid, even if their infection was mild or asymptomatic. It can affect fit and healthy children as well as those with a prior underlying condition.

What does Long Covid look like?

In America, the Center for Disease Control and Prevention (CDC) reports that children can experience the following symptoms:

  • Extreme tiredness
  • Dizziness
  • Rashes
  • Brain fog
  • Headaches
  • Chest pain
  • Stomach pain or upset
  • Sore throat
  • Mood changes
  • Muscle and joint pain or swelling
  • Sickness or nausea

The symptoms vary by individual and can affect any system within the body, e.g. cardiovascular, digestive, nervous system, respiratory and muscular-skeletal.

Children can also go onto develop conditions such as Postural Tachycardia Syndrome (PoTS), Paediatric Acute-onset Neuropsychiatric Syndrome, or Paediatric Autoimmune Neuropsychiatric Disorder associated with streptococcal infections (PANS/PANDAS), Paediatric Inflammatory Multsystem Syndrome (PIMS-Ts) or Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS) as a result of Long Covid (see further information for links to more details on these conditions in children).

Long Covid Kids

In 2021. Long Covid Kids (LCK) became the first UK-based, international registered charity advocating for and supporting families, children and young people living with Long Covid.

The charity focuses on recognition, support and recovery and has already received recognition from the NHS and the US Centre for Disease Control (CDC), as well as being a recommended resource in the NICE Long Covid guidelines (2021).

The charity is launching a new Long Covid Kids support guide – Shining a light on Long Covid in children: A guide to recognition, support and recovery – in very early April.

Created by parents and professionals whose children are living with Long Covid (including educational psychology and occupational therapy input), the support guide aims to be a comprehensive pack containing evidence-based resources and information for parents, families, children, young people, school staff, education, health and social care professionals.

The guide will be free to download, print and save as a digital and paper resource for all those supporting children and young people living with Long Covid.

To accompany the guide a dashboard of five padlets will be available containing further useful links to articles, resources and information for:

  • Children (up to approximately age 11)
  • Young people (from approximately age 11)
  • Families
  • School staff and education professionals
  • Health and social care professionals

The impact on children and young people

Symptoms of Long Covid can develop weeks or months after the initial infection and symptom duration is unclear. Symptoms can be continuous or come and go in the form of relapse and remittance, meaning that some children have “good” days and “bad” days. Some children and young people are still feeling ill since their Covid-19 infection at the beginning of the pandemic in early 2020.

There are no treatments and no cure for Long Covid. Alongside the physical challenges, the uncertainty of the child's future recovery can also have an impact upon mental health.

The result is that children, young people and their families are facing unexpected, long-term debilitating health challenges which can impact upon their ability to access their education.

We are still at an early stage of our understanding about the after-effects of Covid-19. Children, young people and their families need understanding and to be listened to.

Children and young people were asked via their parents on the LCK Facebook support group to describe their Long Covid in one word.

Children and young people living with Long Covid said that they feel ill, sad, hurt, lonely, dizzy and that they are in pain. They describe how it is “draining, exhausting, scary, horrible and never-ending”.

Many children and young people face not being believed about their symptoms, being dismissed, or having their physical symptoms disregarded as “just anxiety”.

What do children and young people want school staff to know?

We asked children and young people if there was one thing that they wished their teacher/s knew or understood about their Long Covid. These were their responses:

  • Every morning I have a headache, feel dizzy and sick – every day!
  • I need you to have compassion and to care: I am not okay.
  • Just because I am at school does not mean I am well.
  • I am worried that you don’t believe I am sick, I may seem okay, but then I am not.
  • I may be a bit better one day, or worse another, or a week later. I may have rested over the holidays, but it doesn’t mean that I’ll be better when I come back to school.
  • There can be good days and bad days. Things can be going quite well until they’re not again.
  • I am worried that I may look and seem okay, but I am not. Please check if I am okay instead of me having to approach you.
  • Sometimes I just can’t think straight.
  • I am trying to pay attention, but my brain just won’t work. It’s too tired.
  • My aches and pains stop me from concentrating sometimes, so I lose my train of thought.
  • I worry about walking from one lesson to another, getting there on time, and being exhausted when I get there.
  • Fatigue can hit quite suddenly, not leaving time to plan ahead. That’s when small things can seem “sooo” large, like putting on boots.
  • I don’t like watching my friends doing PE and not being able to join in. I’d rather be doing something else, somewhere else.
  • My brain used to just work, now it can be hard to just think and find the words or answers.
  • Please make sure “all” school staff and teachers know I am struggling with brain fog, fatigue, anxiety etc.

The numbers of children and young people living with Long Covid are likely to rise. As more children are diagnosed, this will bring significant challenges for school staff to manage as children, young people and their families look to schools for support.

Children, young people and their families need you to understand the devastating and wide-ranging impact this is having on every aspect of their life; they need you to support them with their learning and wellbeing; to believe them and to care.

In the next article (due to publish on April 5), the impact of Long Covid within the classroom will be discussed and I will offer ideas for practical support strategies.

  • Dr Sue Peters is an educational psychologist working with the charity Long Covid Kids & Friends, which works to raise awareness of the symptoms of Long Covid and related illnesses in children to increase understanding, aid early diagnosis, and improve response and intervention. Visit www.longcovidkids.org

Further information & resources

  • Long Covid Kids: Shining a light on Long Covid in children: A guide to recognition, support and recovery. The free guide is due to be published on April 1. To download the guide, go to www.longcovidkids.org/support-guide
  • NICE: Covid-19 rapid guideline: Managing the long-term effects of Covid-19, last updated November 2021: https://bit.ly/3I2FsQx
  • ONS: Prevalence of on-going symptoms following coronavirus (Covid-19) infection in the UK: (March 3, 2022): https://bit.ly/3Cwphd6
  • ONS: Covid-19 Schools Infection Survey, England: Mental health and long Covid (November to December 2021), February 2022: https://bit.ly/3KABrV7

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