COVID-19 (Coronavirus) and children with ARPKD

Updated 8 January 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. 

From 5 January 2021, a third lockdown began in England and Scotland. Wales and Northern Ireland remain under tight restrictions too. 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. See the information below on shielding.

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.

If you child is clinically extremely vulnerable, shield them from COVID-19

If your child is ‘clinically extremely vulnerable’, you and they should take steps to reduce his or her risk of catching COVID-19.

From 5 January 2021, a third lockdown has begun in England and all people who are clinically extremely vulnerable should shield. The government published guidance on shielding (on 5 January this was yet to be updated to include the latest guidance, but we expect it to update shortly). If your child is clinically extremely vulnerable, you should receive a letter soon explaining what this means for them.

Scotland is also in lockdown and clinically extremely vulnerable persons are advised to shield. If your child is in this group, you should receive a letter and can also sign up for text alerts. Guidance on shielding in Scotland is available.

Separate guidance on shielding 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).

Availability of COVID-19 vaccines for children with ARPKD who are clinically extremely vulnerable

The first COVID-19 vaccine was approved for use in the UK on 3 December 2020. An independent specialist committee has advised which groups of people should receive the vaccine first. The highest priority is people living in care homes for the elderly and their carers. They are followed by people aged 80 and over, then 75 and over, and so on down the age brackets, ending at age 50.

Persons (of any age) who are extremely clinically vulnerable are listed in the fourth priority group, alongside those aged 70 years and over. This group includes persons on dialysis, with stage 5 CKD, or who have had a kidney transplant.

The UK Government advises that only those children at very high risk of exposure and serious outcomes, such as older children with severe neuro-disabilities that require residential care, should be offered vaccination. In England, the Prime Minister announced that all eligible persons who are clinically extremely vulnerable should have been offered the vaccine by the middle of February 2021. 

It is not yet known whether COVID-19 vaccines work well in children or in people who are taking immunosuppressants (including people who have had a transplant). Clinical trials are being done to check this. If your child is offered the vaccine, ask your doctor to talk you through the potential benefits, risks and any uncertainties.

Experts in kidney diseases and transplants, including the Renal Association, are pushing to ensure that persons with kidney disease who qualify for vaccine receive it as promptly as possible. They are especially keen to ensure that people attending dialysis centres receive the vaccine as soon as they can, to help to protect them from the dangers of COVID-19.

On the NHS website you can find out more about the vaccine, including how it is given, how well it works, and possible side effects.

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.

Advice for attending school

Schools' opening and closures are subject to frequent change. Please visit the country websites for England, Scotland, Wales and Northern Ireland for the latest information. If your child is currently shielding, they should not attend school. Schools are being advised to take steps to limit the chance of COVID-19 spread, such as social distancing, regular handwashing and cleaning.

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 8 January 2021

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