COVID-19 (Coronavirus) and children with ARPKD

Updated 4 November 2020

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. Please use the hyperlinks below 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 healthy 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) and children who receive dialysis at home.

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 may be at increased risk if:

• they have had a transplant within the last 3 months
• they receive dialysis at a dialysis centre
• they have chronic kidney disease (CKD) stage 5
• they take a high level of immunosuppressive drugs
• or they have liver disease.

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.

The shielding programme has paused, but some people might still be advised to shield

If your child is classed as ‘clinically extremely vulnerable’ you may have been shielding him or her to reduce the risks of them getting COVID-19. The main shielding programme was paused in England, Scotland, Northern Ireland, and Wales at the end of July 2020.

You might be advised to keep shielding your child if your local area has higher rates of COVID-19. Your doctor may also advise you to keep shielding your child for other reasons. 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 UK website and through government websites (see links at the bottom of this blog).

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 child’s dialysis centre provides. For example, there may be limits on how many people can go with your child to the centre and the times you can arrive. If you or your child have symptoms of COVID-19, don’t visit the dialysis centre before telephoning first.

Children should attend school from September, unless advised otherwise

In England, Scotland, Wales and Northern Ireland, governments are planning for all children to return to school in autumn term, including those who were shielding. In some areas, the return to school is being staggered over a couple of weeks. Schools are being advised to take steps to limit the chance of COVID-19 spread, such as regular handwashing and cleaning.

If rates of COVID-19 increase in your local area, you might be told to shield your child if he or she is clinically extremely vulnerable. In this instance, they would not go to school. It’s also possible that a school might need to close if there is a local increase in COVID-19.

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 4 November 2020

Receive updates on the coronavirus and other news, guides and tips from PKD Charity

Stay up to date