Post COVID Syndrome (PCS) in Children and Young People

Key Messages

Children can develop Post COVID Syndrome (PCS) even if they were asymptomatic during the acute phase of the infection.

Problems include fatigue, breathlessness, headache, chest pain and palpitations. Children and Young People (CYP) with Long COVID miss significant amounts of education and social and family activities.

Most presentations in children and adolescents are similar to Post-Viral Fatigue and ME/CFS and existing pathways can be used/adapted to support children and young people with Long COVID

Scope

  • Northern, Eastern and Southern: People aged under 18 years
    • NB: 16–18-year-olds can also be referred via the adult pathway
  • Western - People aged under 16 years

With

  • a convincing history and likely diagnosis of an acute COVID illness that doesn’t predate the COVID pandemic (evidence of a positive COVID test is NOT a requirement)

And

  • the patient has been suffering with symptoms lasting over 12 weeks following an acute COVID illness OR a clear reason is stated in the referral letter why a review is thought to be required before 12 weeks and advice via telephone or an A&G referral with the local paediatric team has been sought

And

  • these symptoms have a significant impact on physical recovery, psychological wellbeing or ability to perform usual activities

And

  • other physical causes of these symptoms have been excluded by physical examination and appropriate investigations. Details of:
    • examination findings and
    • relevant investigation results (see the ‘Investigations’ section for specifics) must be attached to the referral to aid appropriate triage.

Please note that patients whose symptoms predate the pandemic and have not changed as a result of COVID infection are NOT appropriate for this service

Out of Scope

Northern, Eastern and Southern: 16–18-year-olds can also be referred via the adult long Covid pathway

Eastern

Northern

Southern

Western: Young people aged over 16 years can be referred using the adult long Covid pathway

Assessment

Signs and Symptoms

Many CYP will experience the following symptoms (and therefore reassure):

  • Raised heart rate which doesn’t come on suddenly and go away suddenly and present quite a lot of the time. This is called Inappropriate sinus tachycardia. This is seen when CYP are less fit (because they have been unwell), anxious, and can be seen during recovery from an illness.
  • Occasional skipped beats
  • Brief stabbing chest pain

From the evidence available so far, we know that the main symptoms with which children are presenting are:

  • Fatigue / sleep disturbance
  • Headache
  • Insomnia
  • Palpitations
  • Nasal congestion
  • Concentration difficulties
  • Weight loss
  • Persistent cough
  • Skin rashes
  • Altered smell
  • Constipation or diarrhoea
  • Chest pain
  • Daytime sleepiness
  • Abdominal pain
  • Persistent fever
  • General malaise
  • Muscle and joint pain
  • Depression and anxiety

It is recommended that if the parent or patient thinks they have had COVID infection, been in contact with someone who has had it, or had a positive test and has ongoing symptoms the diagnosis of Post COVID should be considered.

12 weeks of persistent symptoms is the typical point of referral for adults. Children may be referred earlier than this, between 4-12 weeks, if the GP is concerned. Should this be considered necessary the GP is advised to discuss via phone with a local paediatrician initially, or via advice and guidance prior to formal referral.

History and Examination

The following information is a guide for primary care professionals assessing CYP with suspected Post COVID

History

  • Confirm if/when the patient is believed to have had COVID-19
  • Include fluctuation of symptoms and trends, social needs, impact of condition on family, education etc
  • Gain an understanding of the patient’s functional baseline prior to contracting COVID-19

Examination and Observations

  • Pulse
  • Oxygen saturation
  • Blood pressure
  • Urinalysis
  • Blood glucose (capillary)

Differential Diagnosis

We are aware that these symptoms are consistent with several other conditions, and some may reflect the impact of the pandemic on children. To help you to distinguish between children with suspected post covid and those with other conditions we recommend you consider if there has been a stepwise /quantum change in the patient’s behaviour or symptomatology realistically chronologically related to COVID contact or illness?

If there is clinical doubt, then please seek advice via an A&G referral, ensuring the request is directed to the named PCS Consultants for each trust:

Eastern: Please write for A&G to general paediatrics

Northern: Dr Dermot Dalton

Southern: Dr Richard Tozer

Western: Dr Samuel Broad

Red Flags

Send sick children to ED / children’s assessment unit as you always do according to the traffic light system. If in doubt discuss with secondary care (be prepared with a set of observations and your reasons for being uneasy)

Other red flag symptoms:

  • Unexplained breathlessness
  • Uncharacteristic chest pain or heartbeat sensations
  • Rapid weight loss or gain
  • School absence despite the introduction of simple measures.
    • This is a specific red flag for Post-Covid syndrome

Note: Sudden onset & termination of fast HR suggests pathway mediated tachycardia. This is not COVID related so check for symptoms before COVID infection.

PIMS-TS is a rare, serious condition caused by COVID. All children will have a fever, which persists over several days. There’s a very wide range of other symptoms that children might have, including: abdominal pain, diarrhoea, vomiting, rash, cold hands and feet and red eyes. Children in whom PIMS-TS needs to be considered will usually appear ‘sick’ and have one or more ‘red flags’.

Investigations

Laboratory Tests may be considered and tailored upon presenting symptoms:

  • FBC (and blood film)
  • U+E (including creatinine)
  • LFTs
  • TFTs
  • ESR or PV
  • CRP
  • Blood glucose
  • Coeliac Screen
  • CK
  • Ferritin

Please note: these investigations are suggested and not mandatory for referrals.

Management

Advice about how children with PCS can be managed in primary care

Although the condition can be debilitating and worrying for the child and their family, it is anticipated that the vast majority of children will go on to make a full recovery.

Most children with PCS can be managed in primary care through simple interventions such as:

  • Regular bedtime and morning routines including, or separate from, siblings as households can manage.
  • Temporary reduction in out of school activities. It is usually better to make equal reductions to every school day rather than reduce the number of school days whilst keeping day length the same (although this may not be possible for young people in GCSE and A Level years).
  • Communication with teachers, heads of year, SENCOs as appropriate to make the most of school time.
  • Sharing information and concerns with local and national NHS and voluntary groups.
  • Appropriate use of symptomatically targeted medication e.g., antacids, moisturisers, allergy, and asthma medications.

Resources specific to Children and Young People are being developed for NHSE. Your COVID Recovery | Supporting your recovery after COVID-19 has an adult focus and may or may not be helpful for individual children and young people.

Long COVID Kids is parent led and reasonably balanced and appropriate.

Action for ME is a useful source for managing fatigue symptoms in Long COVID

Referral

GPs should normally refer the following to their local Paediatric service:

Acute COVID (less than 4 weeks) – Urgent/Same Day referral if signs, symptoms, or investigations suggest significant or serious illness including but not limited to PIMS-TS

Ongoing Symptomatic COVID (4-12 weeks) – Consider referral depending on symptoms (particularly if organ impairment is suspected, or worsening general symptoms)

Post COVID Syndrome (over 12 weeks) – Refer any children and young people with ongoing symptoms.

Only a small number of children will require specialist intervention by a tertiary centre. GPs are asked to refer to their usual paediatric team.

Managing patient expectations

The investment into PCS services nationally and regionally is primarily for assessment and not treatment. Patients (adults and children) will therefore be routinely referred into existing treatment or rehab pathways. As you are aware, there are now long waiting lists across the NHS so the patient may need to be made aware that they could be waiting some time.

Referral Instructions

e-Referral Service Selection

Specialty: Children and adolescent

Clinic Type: General

Service:

  • DRSS-Eastern-Paediatrics- Devon CCG-15N
  • DRSS-Northern-Child & Adolescent Services- Devon CCG - 15N

Advice & Guidance- please direct to the Paediatric Long Covid named clinician below in the locality:

Eastern: Please write for A&G to general paediatrics

Northern: Dr Dermot Dalton

Southern: Dr Richard Tozer

Western: Dr Samuel Broad

Supporting Information

Patient Information

Resources specific to Children and Young People are being developed for NHSE. Your COVID Recovery | Supporting your recovery after COVID-19 has an adult focus and may or may not be helpful for individual children and young people.

Long COVID Kids is parent led and reasonably balanced and appropriate.

Action for ME is a useful source for managing fatigue symptoms in Long COVID

Pathway Group

This guideline has been signed off on behalf of the NHS Devon.

Publication date: July 2022

 

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