Coronavirus (COVID-19) and children with ARPKD
Updated 10 July 2020, 4:30pm.
Below we provide the latest information on COVID-19 for families with a child or adolescent with autosomal recessive polycystic kidney disease (ARPKD).
What are the symptoms of COVID-19?
Are children with ARPKD at higher risk of severe illness from COVID-19?
How do I know what level of risk my child is at?
What can parents of children with ARPKD do to protect them from COVID-19?
Do I need to ‘shield’ my child?
What if your child has had a kidney or liver transplant?
What if your child is on dialysis?
What about children who are due to have a transplant?
Can my child (and their siblings) return to school?
What should you do if your child has symptoms?
What if others in the household are showing COVID-19 symptoms?
How can I get food and other essentials if we are self-isolating?
Are children with hypertension at greater risk from COVID-19?
Will there be a shortage of prescription medications due to COVID-19?
How can we cope?
Where to get the latest advice
The COVID-19 virus causes:
- a high temperature (37.80C or more)
- coughing repeatedly
- anosmia (loss of or a change in normal sense of smell).
We understand that the COVID-19 outbreak is especially concerning for parents of children and adolescents with ARPKD.
Experts have provided reassurance that children are unlikely to get unwell from COVID-19. This is true even for children taking immunosuppressants (for example because they have had a transplant).
However, because COVID-19 is a new illness, experts are still unsure exactly how it might affect children with a rare disease like ARPKD. Children who have had a transplant in the last 3 months, who take a high level of immunosuppressive drugs, or who have liver disease are likely to be at highest risk.
Your child’s treatment team can estimate your child’s risk of getting seriously unwell from COVID-19. They will consider your child’s general health and whether or not he or she is receiving dialysis or has had a transplant. The different risk levels are:
- Clinically extremely vulnerable – these children are at the highest risk
- Clinically vulnerable – these children are at a middle level of risk (intermediate risk)
- Not at increased risk – these children are no more likely to get unwell from COVID-19 than other children
Your child’s treatment team will provide advice on what steps you should take to protect your child based on his or her risk level.
Reducing your child’s risk of COVID-19 means that your whole household needs to be careful to reduce their infection risk.
You can find rules and advice for people living in England, Scotland, Northern Ireland and Wales online. Guidance might change quickly over the next few months as governments react to numbers of people with the virus going up or down. Read and follow the advice for your nation carefully.
Please see general advice from the NHS on how to reduce your chance of getting COVID-19. This includes regular hand washing (or sanitizing) and avoiding close contact with people who are ill.
Also ensure that your child’s kidney centre has up-to-date contact details for you so they can get in touch regarding changes to services or appointments. This applies to dialysis and transplant centres too.
It is a good idea to keep a note of any medications that your child takes and any recent test results. This is so that, if they do get COVID-19 symptoms, you can share this information with doctors caring for them.
Children who are extremely clinically vulnerable or clinically vulnerable should be shielded (see below).
Your doctor will advise on this. If your child is clinically vulnerable or extremely clinically vulnerable you should continue to shield them.
- Extremely clinically vulnerable: continue to follow all advice on shielding provided by your nation
- Clinically vulnerable: follow advice on shielding provided by your nation. However, experts recommend that it is okay to leave the house to exercise with your household if you follow strict social distancing rules.
Please check the guidance in your home country for the latest guidance on shielding:
Children (and adults) who have had an organ transplant might be at higher risk of serious illness from COVID-19. The risk is thought to be greatest in the first 3 months after a transplant and with high levels of immunosuppressive drugs.
If your child is taking immunosuppressants, don’t stop their immunosuppression unless a transplant specialist recommends this. Stopping their immunosuppression could:
- put their donated organ at risk
- increase the chances of requiring a hospital admission
- further increase the need for immunosuppression medicines and even invasive tests i.e. a biopsy.
On 27 April 2020, the Chief Medical Officer in England announced that people on dialysis should shield. However, experts are now advising that children on dialysis are only at increased risk if they go to hospital for dialysis. Those who have dialysis at home (peritoneal or haemodialysis) are thought to be at no increased risk from COVID-19.
Your child’s dialysis team will be able to provide more information on their level of risk and the steps you should take.
Dialysis centres are still open and are providing dialysis. Staff are taking extra precautions to avoid the spread of infection. For example, all dialysis staff should be wearing disposable plastic aprons, gloves and a surgical mask. Don't stop taking your child for dialysis (see below on what to do if you have symptoms of COVID-19). You might need to be more flexible about appointments with the dialysis centre. Services for transporting patients might be delayed – be patient. Let the dialysis centre know if you’re having problems getting your child to and from appointments.
Your child’s kidney unit will contact you with more information and details about getting regular blood tests when needed.
Tips for going to appointments include:
- Only one adult should accompany your child into the unit (other adults and children should stay at home if at all possible).
- Avoid using public transport if you can.
- Don’t arrive early.
- If you are early, ask if you can wait outside (e.g. in your car) rather than in the waiting room.
Some centres may have special arrangements such as:
- having discussions with you on the phone rather than face to face where possible
- arranging home delivery of medicines
- asking you to attend a local service rather than the dialysis centre for blood tests.
If your child is on dialysis and they or a household member has COVID-19 symptoms, use the online NHS coronavirus service. Ring 111 for advice if you can't use the online service. Also call their dialysis team if they have a fever because it could be a sign of an infection from their dialysis. If they have a haemodialysis session coming up, call the dialysis centre to make special arrangements for your child’s kidney care – don’t visit the dialysis centre before calling.
If your child is scheduled to have a kidney or liver transplant soon (or is on a waiting list), it is possible that the procedure will be delayed due to the COVID-19 outbreak. Alternatively, his or her operation might still go ahead if specialists and you as parents jointly feel that the benefits outweigh the risks.
If your child is due to have a living organ donation and recently had tests to confirm the suitability of their donor, it’s possible that their transplant will be delayed. Transplant centres are deciding what it is best to do bearing in mind risks to patients' health of delaying surgery versus risks posed by the COVID-19 outbreak. Your child’s transplant team will be able to provide more information.
If they think that your child’s transplant operation might be able to go ahead, they will explain to you the risks. These include:
- the possibility of your child catching COVID-19 during or after his or her operation
- your child being at higher risk of getting seriously ill from COVID-19 (should he or she catch it) during his or her recovery
- possible disruptions to hospital services that could affect your child’s access to follow-up care or emergency care.
You’ll need to weigh up these risks against the benefits to your child of having a transplant, which might include:
- a reduction in symptoms
- improved quality of life
- better life expectancy.
Your child’s transplant team will give you as much time as they reasonably can to make the decision of whether or not to proceed.
You might be advised to shield your child carefully for 1 or 2 weeks before their operation.
If your child and a potential living donor were due to have tests to confirm suitability (i.e. whether or not they are a good match) in April, these tests will be postponed.
Transplant centres are assessing the risk of living and deceased donors having COVID-19.
In England, schools are now starting to reopen, starting on 1 June with nursery, reception, and years 1 and 6. Schools are being advised to take measures to limit the chance of COVID-19 spread, such as regular handwashing and cleaning. The government is planning for all children in England to return to school in September. This will require increasing class sizes beyond the current limit of 15. The government has not drawn up full plans yet.
In Scotland, a return to school might begin is planned on 11 August, with public health measures in place. Read more here.
In Wales, it is planned for schools to reopen on 29 June, with only a third of pupils in a class at any one time. Read more here.
In Northern Ireland, it is planned for schools to reopen on 24 August, beginning with Primary 7, Year 12 and Year 14 pupils. Read more here.
If your child is extremely clinically vulnerable, they should continue shielding at home and not go to school, whilst shielding continues. Whether or not their siblings can return to school will depend on whether they can follow strict social distancing advice. This will depend partly on their age.
It is not yet clear whether all children who have been shielding are expected to return to school in September. The Deputy Chief Medical Officer has said that many children who have been shielding could return to classrooms in September. As soon as government or expert advice becomes available, we will update this blog.
If you child is clinically vulnerable, speak to your child’s treatment team to help you make a decision about whether or not he or she returns to school. You will need to balance the risk of COVID-19 against other needs, such as your child’s mental wellbeing and education. Experts say siblings of clinically vulnerable children should be able to attend school.
If your child or anyone else in your family develops symptoms, they must stay at home for 7 days from when symptoms start (i.e. ‘self-isolate’) and the rest of you without symptoms must stay at home for 14 days. Follow the guidance on staying at home for households with possible coronavirus (COVID-19) infection.
Use the online NHS 111 coronavirus service. Ring 111 for advice if you can't use the online service. Don’t visit your GP or the kidney unit if you or a family member have symptoms (see later on this page for information for those on dialysis).
Self-isolation can be a difficult time for families. We encourage you to support one another through our PKD Charity online groups.
It’s a good idea to make a plan for what you’ll do if you or others caring for your child become unwell.
If you are shielding your child and they aren't showing symptoms of COVID-19 but others in the household are showing symptoms, ideally your child should stay with friends and family until the isolation period of your household member finishes. Follow the guidance on staying at home for households with possible coronavirus (COVID-19) infection.
Depending on their age and needs this might not be realistic. If it’s not feasible for them to move out temporarily, they should stay away from others in the house as much as they possibly can. However, you’ll need to balance this with trying to maintain a normal family life and ensuring your child’s emotional and physical needs are met.
A summary of government advice to reduce their risk is below. You’ll need to adjust this for babies and young children (e.g. by isolating your child together with a parent without symptoms).
What steps you can realistically take will differ family to family. We strongly recommend you get advice from a medical professional so you can reduce your child’s risk as much as possible.
- Your child should spend as little time as possible in shared spaces such as kitchens, bathrooms and sitting areas.
- Keep shared spaces well ventilated.
- Aim to keep 2 metres (3 steps) away and sleep in a different bed where possible.
- They should use a separate bathroom if you have one and use separate towels for drying after bathing, showering and washing their hands.
- If you share a toilet and bathroom, others should clean it after use.
- After each cleaning, your child should be the first to use it.
- Your child should not use the kitchen when others are in it and should take their food to their room to eat, if possible.
- If you have one, use a dishwasher.
- If your child is using their own utensils, dry them with a separate tea towel.
- Everyone in your household should regularly wash their hands, avoid touching their face, and clean frequently touched surfaces.
Use the online NHS coronavirus service for advice. Call 111 if you can't use the online service.
Self-isolation can be a difficult time. We encourage you to support one another through our online PKD Charity groups.
If possible, don’t go out even to buy food or get medicines. Order by phone or online or ask friends or relatives.
Contact your council to ask what services they can provide or contact a charity or voluntary group such as Covid Mutual Aid UK.
If your child is 'extremely vulnerable' (ie shielding), the support available for you differs by country.
- England - support is available for you from the government. This help will end on 31 July 2020 provided cases of COVID-19 remain low. If you would still like help with tasks such as shopping after this time, contact the NHS volunteers service, your council, or local Covid Mutual Aid UK group.
- Scotland - support is available for you from your local authority.
- Wales - support is available for you from your local authority.
- Northern Ireland - support is available for you from local groups.
Experts say there is no evidence that people who already have high blood pressure (hypertension) are more likely to get seriously ill from COVID-19 than people with normal blood pressure. Experts strongly recommend that people taking medication to reduce their blood pressure continue to do so.
There are no drug shortages currently being reported due to COVID-19, according to the Association of the British Pharmaceutical Industry (ABPI). The government and pharmaceutical industry have strong plans in place in the event that drug manufacture and supply is affected by COVID-19.
The threat of COVID-19 and the changes that we are all needing to make our lives are putting every one of us under immense strain. We understand that if your child is at higher risk, this is an especially worrying and stressful time.
You can find useful tips for how to talk to your child about COVID-19 and help them to cope on the Royal College of Paediatrics and Child Health website.
Public Health England has also published advice for parents and carers on how they can support children and young people during the pandemic. Things you can do to help them to cope include:
- Listen and acknowledge your child’s views, feelings and behaviours
- Provide clear information
- Be aware of your own reactions
- Connect regularly
- Get into a new routine
- Limit your child’s exposure to repeated news
- Talk about what your child has seen and heard with them
The page also explains how children might react differently depending on their age. There are tips for supporting children and young people with learning difficulties, autism or who are currently accessing mental health services.
Useful organisations include:
- Young Minds provides advice about mental health and behavioural problems in children and young people up to the age of 25 (Parents’ and Carers’ Helpline: 0808 802 554).
- ChildLine is a helpline for any child with a problem. They offer comfort, advice and protection (0800 1111, chat with a counsellor)
- The Mix has a helpline that aims to find young people the best help, whatever the problem (0808 808 4994; you can also email, chat online, or message).
We encourage you to support other families through our online PKD Charity groups and stay in touch with family and friends by phone or online.
We’ve posted some ideas here on how to stay physically and mentally active during this challenging time. However, try not to spend too much time on news streams and Social Media.
The picture on COVID-19 is changing fast. Check the below websites for the latest information:
- Government websites for England, Scotland, Northern Ireland and Wales
- Kidney Care UK
- The British Liver Trust
You may also wish to check the website of your child’s kidney centre, dialysis centre or transplant centre for their latest advice.
Please do not rely on this page for information and advice as it is likely to become out of date quickly.
This page was written based on the latest information from the Cabinet Office, NHS England, Public Health England, the Renal Association, Kidney Care UK, the British Transplantation Society, NHS Blood and Transplant, The Transplantation Society, European Society of Cardiology, the British Association for Paediatric Nephrology, the Nephrology Journal Club (#NephJC), NHS Inform Scotland, Llywodraeth Cymru Welsh Government, Community NI, ERN Rare Liver, the British Liver Trust, and leading experts in kidney disease.Thank you to Professor Paul Winyard (ICH/GOSH) and Dr Tassos Grammatikopoulos (King's College Hospital) for reviewing an earlier draft of this information.
Last updated on 10 July 2020