'Cautious Tortoise' is an easy to follow flow chart that aims to gently guide parents and caregivers through the early steps of their child's recovery while supporting them to preserve energy to aid ongoing recovery.
While it is natural to want to 'get back to normal' after being unwell, 'pushing through' is ill-advised, and may prolong recovery time in some children.
Please note that this is a living blog that will continue to be updated as we learn more about Long Covid.
What does the government advise?
Current UK government guidance focuses on the acute and infectious period of COVID-19 and advises that children can return to school following their relevant isolation period, once the criteria for release has been satisfied.
Long Covid Kids urge families to proceed cautiously
It is not uncommon for childhood diseases to require a prolonged recovery period. Long Covid Kids always advise seeking medical advice for new or ongoing symptoms.
'NICE' defines symptoms that last longer than four weeks as Long Covid.
On the 6th October 2020 The World Health Organisation published their clinical definition. WHO state "a separate definition may be applicable for children".
The CLOCK Study and international partners are working on a separate research for children.
When can a child be referred to a paediatric Long Covid hub?
GPs in England have the ability to refer any child with ongoing and persisting symptoms lasting four weeks or more to a NHS Long Covid Hub. They can also refer to other health care professionals for additional support, you can read more about these is our support guide.
Shining A Light On Long Covid in Children and Young People. A guide to recognition, support and recovery. With sections for children and young people, parents and caregivers and schools. Launching April 1st 2022.
How many Children get Long Covid?
From the very start of the pandemic to date, children from all over the world have been reporting complications from SARS-Cov-2 infection. COVID-19 isn’t a seasonal virus and we know from government and anecdotal reports that COVID-19 reinfections are occurring.
Further, we are seeing Long Covid develop in second or third infections. Public messaging and information dissemination is therefore now more crucial than ever.
In the UK we benefit from the ONS prevalence estimates which currently indicate that 119,000 children and young people are living with Long Covid; 21,000 of whom are still experiencing symptoms after 12 months.
It is pertinent to note that anecdotal evidence indicates symptom duration is continuing
from first wave infections to date.
Prevalence estimates from research vary. This is because different studies use different methods. For example:
The symptoms the researchers choose to study
The number of symptoms
The symptom duration
How a case is determined
Calculations based on all children infected or all children in the population
Definitions of relapsing and remitting symptoms
Use of a control group and how robust the control group is.
Until we have a worldwide agreed definition for paediatric Long Covid and formally count prevalence, the scale of the burden will always remain unclear. While our international friends work with the UK towards a clinical case definition for children, the World Health Organisation has provided us with the first clinical case definition for Long Covid in adults.
Early research reports between 1, ~14% and 25% who contract SARS-CoV-2 go on to experience longer-lasting symptoms which can include;
Long Covid Symptoms In Children
Image from our support guide 'Shining A Light On Long Covid In Children And Young People'
What is PEM/PESE?
PEM is the term used to describe the feeling following increased activity demands. People with PEM may experience a worsening of symptoms or fatigue that may not start until 48 hours after the activity, but that can last for days.
PEM can follow different types of activities including;
Physical
Cognitive
Emotional
Social
PEM is known to be a classic symptom of ME/CFS Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Long Covid Physio prefers the term Post Exertional Symptom Exacerbation (PESE) because it better describes the condition.
PACING activity and rest is a recognised management strategy for ME/CFS. Long Covid may affect a child's ability to engage in everyday activities in a similar way. The impact on activities may include:
Personal care
Socialising
Hobbies
School
Each child's recovery requires an individualised approach and may benefit from the additional recovery time suggested within 'Cautious Tortoise' before returning to their school schedule and usual essential activities.
In the absence of evidence-based research into Long Covid rehabilitation, Long Covid Kids recommend this cautious approach in place of alternatives such as Graded Exercise Therapy that are reported to cause harm in those with ME/CFS.
Long Covid Physio Quick Access Page has links to the World Physiotherapy information sheets by World Physiotherapy, available in different languages including English, Traditional Chinese, Hindi, Spanish, Arabic, Bangla, French, Russian, Brazillian Portuguese, Urdu, Indonesian, German, Japanese, Korean and many different languages from the World PT Day toolkit.
'Cautious Tortoise' is not intended to replace medical guidance, it is designed to provide a guide that can support medical advice.
It is a guide that will need to be adapted for each child.
It can be used to support discussions with:
Clinicians/Doctors
Family members
Friends
School staff
Occupational Therapist
When is the right time to go back to school?
The 'right time' to return to school will vary for each child, with some children bouncing back; and others taking weeks or many months.
One thing we do know is that 'pushing through' can be harmful
'Cautious Tortoise' encourages a balance between physical health and emotional wellbeing and prioritises recovery while carefully considering the extra activity demands that attending daily activities, including education require.
The American Academy of Paediatrics recommends clearance for sports after COVID-19 that should include cardiac screening. The updated guidance provides more details on the care of children and young people who have had COVID-19, with a focus on cardiac evaluation, due to the growing literature about the relationship between COVID-19 and myocarditis.
Recovery isn't always linear, and finding the right path can take time, kindness and patience.
Remember to reach out for medical advice as many times as you need, every one is learning about Long Covid, including the medical professionals.
Join our Support Services for ongoing peer to peer support.
We can do this together.
Like you members of LCK are searching for answers, trying to connect the dots, caring, supporting. Protecting.
In March 2022 there were over 10,000 members engaging with Long Covid Kids Support Services. Membership grows by 150 to 200 a week. We began as a grassroots international Facebook group and now have our website, social media accounts and Support Services. Since becoming a UK based international charity in October 2021 we have been able to evolve and extend our services to meet the growing needs of parents, children and young people. At the beginning of 2022, we proudly launched two new free members services for families and children. To help us adhere to our safeguarding policy our Support Services require pre-registration.
ChatBox Online Forum ChatBox is a space for parents, caregivers, children and teenagers from ages 8-17 years to communicate online. Separate age- appropriate channels provide a safe space for peer-to-peer support:
• Age 8-11 years • Age 12-14 years • Age 15+ years • Parents & caregivers
Members can choose to engage in specific topics and discussions that interest them. For example, children can connect with other children of similar ages, interests and symptom durations and form supportive friendships in their own country. ChatBox can be used in between LCK Connected sessions to nurture relationships and gain support.
LCK Connected LCK Connected offers weekly Zoom HangOuts led by our experienced volunteer team and provides a welcoming session for children from ages 6-17 years, parents and caregivers. Members can actively participate and chat with cameras on, others pop in to say ‘Hello’ at the start and then switch their camera off, hang out, chill and listen. Members often choose to continue discussions, friendships and peer-to-peer support via ChatBox
Padlet Padlet is an interactive website/app that provides a visual library of internet links that our team will update as new information emerges. Think of it like a scrapbook of useful links. Since the start of the pandemic, Long Covid Kids have been collating resources and information to help us improve recognition, support and recovery.
We have five Padlets for different audiences;
• Children
• Young people
• Families
• Schools/education professionals
• Health and social care professionals
Sign up to view Padlet here bit.ly/3CZDgZ7 Children bit.ly/3DbaR2d Young People bit.ly/3IEJOh0 Families bit.ly/36x5xu9 Schools & Educators bit.ly/35a2PKr Health & Social Care Professionals bit.ly/3IEKwuG
This poster can be downloaded as a PDF file below - please also see LCK Pacing Penguins.
LCK Senior Occupational Therapist and CEO
Published: 3rd October 2021
Last updated: 29th March 2022
About
In 2021 Long Covid Kids became the first UK-based, international registered charity advocating for 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 Centre for Disease Control in the USA, as well as being a recommended resource in the NICE Long Covid guidelines.
Support Our Work
While children are living with life changing symptoms and families struggle to seek support, we need to be here. Your donation will be used directly to support families living with Long Covid. Find out more about our Impact.
Our Mission
Purpose
We believe all children should be able to thrive and look forward to a positive future. That is why we represent and support children and young people living with Long Covid and related illnesses and the parents and caregivers that look after them.
Our Vision
To achieve recognition, support and recovery for Long Covid and related illnesses in children and young people