What do we know about long COVID in kids?

Long COVID, also known as “post-COVID condition” is an umbrella term for a range of symptoms that can persist for months after the initial acute phase of COVID. Long COVID may include fatigue, post-exertional malaise, disordered sleep, cognitive difficulties, pain, anxiety and depression. These symptoms can impact people of any age, including children.

Recognition and support from health-care professionals is important in recovering from long COVID. Identifying it early and implementing management strategies can prevent symptoms becoming entrenched, and prevent more significant problems in the future.

Defining long COVID has been difficult due to varied symptoms and time frames that make it difficult to consistently characterise and compare the condition.

A review of long COVID research in children found mood symptoms, fatigue and sleep disorders were the symptoms most commonly reported. In total, more than 40 symptoms were included, ranging from mental health, gastrointestinal, cardiac and respiratory symptoms.

However many studies on long COVID have lacked a control group (meaning comparisons with children who didn’t have COVID), making it difficult to separate the symptoms of long COVID from the indirect impacts of the pandemic on children.

For example, high rates of depression and anxiety have been observed in children, likely related to the effects of lockdowns, school closures and social isolation. These conditions share many features with long COVID and complicate the interpretation of research into the condition.

More recent studies that have included a control group identified only a very small increase in long-COVID symptoms following mild COVID infection, compared with those who tested negative for COVID. This potentially means long COVID in kids is quite rare.

Our COVID follow-up clinic at The Royal Children’s Hospital Melbourne was running from mid-2020 to mid-2023. We saw more than 600 children throughout that time.

In our experience, most children recover fully after COVID in a similar way to other viruses.

A small proportion experience prolonged symptoms including fatigue, post-exertional malaise, concentration difficulties and pain. These symptoms are similar to other post-viral syndromes such as chronic fatigue syndrome (also known as myalgic encephalitis), for which viruses are a common precursor. Some patients we saw fulfilled the criteria for chronic fatigue syndrome following their COVID infection.

Another group of children in our clinic developed physical complaints, such as headache and chest pain. But most of these children had normal test results, which is reassuring. However the symptoms can still have an impact on day-to-day functioning such as participation in school and other activities.

Recognition and support of children with long COVID symptoms is often delayed. Children and families report that they don’t feel heard or are misunderstood by others, including health-care providers.

It’s hard to live with the uncertainty of not knowing how long symptoms will last.

In our experience with long COVID, most children experience complete recovery or significant improvement from three to six months after infection.

There has typically been minimal impact on functioning. However there have been rare severe cases, with more debilitating fatigue impacting attendance at school and activities. These patients generally receive a diagnosis of chronic fatigue syndrome and are managed accordingly.

Children and families feel frustrated because there is no specific treatment or cure.

While there are trials underway in adults, there is no medication or cure available for long COVID.

The Australian government has announced $50 million for research into long COVID, which will provide further avenues of support and treatment.

The current recommended approach for managing long COVID in children is based on the recognised management of chronic fatigue syndrome.

This approach may involve a range of health professionals including GPs, paediatricians, physiotherapists, exercise physiologists and psychologists, according to the needs of the child. They support the patient to build up to managing daily tasks such as going to school, exercising, or participating in activities, taking into consideration how much energy they have at each stage to prevent burnouts.

Symptoms such as trouble sleeping, dizziness and cognitive difficulties may be managed through lifestyle modifications such as sleep hygiene practices (going to bed at the same time, no screens before bedtime), or medication.

It’s important activities continue, at a level that’s appropriate for the patient’s stage of recovery. This includes school and social outings.

While a cure for long COVID is not yet available, self-management and attempting to minimise secondary impacts such as missed school are crucial to preventing mental health issues and physical deconditioning (the body becoming accustomed to doing less).

It’s important to seek medical attention if COVID-related symptoms such as fatigue persist for more than four weeks. A review with your GP or paediatrician is a good place to start if you have concerns for your child.