COVID-19 (Coronavirus) and children with ARPKD

Updated 21 July 2021

We provide some quick facts here on COVID-19 for families of children with autosomal recessive polycystic kidney disease (ARPKD). The situation keeps changing and rules can differ by area. 

0n 19 July 2021, retrictions related to COVID-19 were relaxed in England. Some restrictions remained in Scotland, Wales and Northern Ireland. Please use the hyperlinks on this page to find further information relevant to you.

Your child’s doctor, renal centre, dialysis centre or transplant centre should keep you up to date. Contact them if you’re unsure how their services are affected or for health advice.

Some children with ARPKD may be at increased risk of getting severely unwell if they get COVID-19

We understand that the COVID-19 outbreak is especially concerning for parents of children and adolescents with ARPKD. Experts say that children and young people are unlikely to get unwell from COVID-19. This is true even for children who have chronic kidney disease (CKD) or who are taking immunosuppressants (for example because they have had a transplant) and children who receive dialysis.

Of 44 children with CKD who got COVID-19 in the UK in 2020, most had mild symptoms only. Their symptoms were no different to those of children without kidney disease who caught COVID-19. They were also no more likely to have lasting problems from COVID-19.

However, as COVID-19 is a new illness, experts are unsure how it might affect children with a rare disease like ARPKD. Children with ARPKD might be at increased risk if:

• they have had a transplant within the last 3 months
• they take a high level of immunosuppressive drugs
• they are thought to be at higher risk for other reasons.

If your child is at increased risk, he or she will be classed as ‘clinically extremely vulnerable’. Your child’s treatment team will explain what steps you should take to protect your child from COVID-19. The shielding programme has ended (see later).

Children who have high blood pressure (hypertension) are probably no more likely to get seriously ill from COVID-19 than children with normal blood pressure. If your child is taking medicine to reduce his or her blood pressure, they should keep taking it.

Shielding has paused for people who are clinically extremely vulnerable

If your child is clinically extremely vulnerable, government advises you to continue to take extra precautions to protect them including:

• maintaining social distancing from persons other than your household/bubble
• when meeting people inside, keeping areas well ventilated.

The English government is now advising that clinically extremely vulnerable children should go to school. Please see the government’s guidance on shielding and protecting people who are clinically extremely vulnerable for more information.

Separate guidance is available for Scotland, Northern Ireland, and Wales.

In addition to guidance from governments, your doctor might also recommend you and your child take extra precautions. For example, if your child is on the transplant waiting list or has had a transplant within the last 3 months, your transplant unit may advise you to shield him or her.

Contact your dialysis centre, transplant centre, kidney specialist or doctor if you’re unsure whether or not you should be shielding your child.

More information is available on the Kidney Care website and through government websites (see links at the bottom of this blog).

Can children be vaccinated against COVID-19?

The Pfizer/BioNTech vaccine is approved for use in children aged 12 years and above. Most children in the UK are not being offered the vaccine because their risk of getting seriously ill from COVID-19 is so low.

The following groups of children can be offered the vaccine:

• Chilldren aged 12 to 17 years old at increased risk of becoming seriously unwell from COVID-19 (this group includes children taking immunosuppressants, such has those who have had a kidney or liver transplant)
• Children aged 12 to 17 years old who live with a person who is taking immunosuppressants (this is to help protect the person who is immunosuppressed)
• Children aged 17 years old who are due to have their 18th birthday within the next 3 months.

Recent studies show that COVID-19 vaccines probably work in some – but not all – adults who have had had a kidney transplant. However, we don’t yet know how well the vaccines work in children who have had a transplant.

A clinical trial has shown that children generally have only mild or moderate side effects from the vaccine. These side effects don’t last long. However, as not many children have had the vaccine across the world, it is possible that very rare side effects in children are not yet known. The safety of the vaccine in children taking immunosuppressants hasn’t been studied yet.

Children taking immunosuppressants should not stop taking them unless advised by transplant specialist

Stopping your child’s immunosuppression could put their donated organ at risk and increase the chance of them needing hospital treatment.

Dialysis centres have put measures in place to reduce the risk of COVID-19

Please follow the instructions your dialysis centre provides. For example, there may be limits on how many people can accompany your child and the times you can arrive at the centre.

Your dialysis centre may provide you with a special mask (a fluid-resistant surgical mask) to wear while travelling to appointments and while at the dialysis unit. These masks reduce the chance of spreading the virus.

Advice for attending school

Schools' opening and closures are subject to frequent change. In England, government is now advising that children who were shielding should return to school. Please visit the country websites for England, Scotland, Wales and Northern Ireland for the latest information.

Schools are being advised to take steps to limit the chance of COVID-19 spread, such as ventilation, regular handwashing and cleaning.

If your child needs to stay at home due to COVID-19 risks or other health reasons, the school should provide remote learning.

Support is available to help you cope through the pandemic

The threat of COVID-19 and the changes that we have made to our lives are putting every one of us under strain. We understand that if your child is in high-risk group or self-isolating, 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. The page 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.

More organisations providing advice are provided later on this page.

We encourage you to support other families through our online PKD Charity groups. Stay in touch with family and friends by phone or online. Try not to spend too much time reading news on COVID-19 and social media.

Where to find more information

Last checked or updated on 21 July 2021

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