Coronavirus (COVID-19) and children with ARPKD
Updated 4 April 2020, 4:30pm.
As the COVID-19 pandemic continues, we ask whether children and adolescents with autosomal recessive polycystic kidney disease (ARPKD) and their families need to take special care regarding the virus.
What are the symptoms of COVID-19?
Are children with ARPKD at higher risk of severe illness from COVID-19?
What can parents of children with ARPKD do to protect them from COVID-19?
What if your child has had a kidney or liver transplant?
What if your child is on dialysis?
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?
What about children who are due to have a transplant?
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
- shortness of breath.
These symptoms are similar to a cold or flu. About 4 out of every 5 people with COVID-19 have mild symptoms. Others can develop more severe disease such as pneumonia (inflamed lung tissue) requiring treatment in hospital.
Most people recover from COVID-19 without specific treatment. However, people who are elderly or have underlying health conditions (such as asthma, diabetes, heart disease or chronic kidney disease) may be more likely to get severely ill from COVID-19 than other people.
We understand that the COVID-19 outbreak is especially concerning for parents of children and adolescents with ARPKD. Whether or not your child is at increased risk of getting seriously unwell from COVID-19 depends on their kidney function.
In general, children are unlikely to get unwell from COVID-19, but some children are at higher risk. Your child is likely to be at higher risk of getting severely ill from COVID-19 if he or she has ARPKD and:
- has chronic kidney disease (CKD) stages 4 or 5 (kidney function eGFR 59 or below)
- or has stage 3 CKD (eGFR 59 or below) and other medical conditions
- or is on dialysis or has had a transplant.
Reducing your child’s risk of COVID-19 means that your whole household needs to be careful to reduce their infection risk.
The government has now said that all people stay at home and away from others. This is especially important for the elderly and those with pre-existing medical conditions, including those with CKD. Most schools are closed until further notice.
It is expected that these measures will continue for at least 12 weeks.
Please see general advice from the NHS on how to reduce your chance of getting COVID-19. This includes regular hand washing (or sanitising) 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.
Your child’s kidney centre is likely to be in touch (if they have not been already) about your child’s treatment plans. You may also wish to check their website for advice.
Children (and adults) who have had an organ transplant are thought to be at especially high risk of serious illness from COVID-19. You’re advised to take extra measures to protect your child. This is called shielding. See the gov.uk website for latest advice on shielding.
At the time of writing, shielding included:
- Staying at home at all times.
- Avoiding all face-to-face contact (until otherwise advised).
- Visits from people who provide essential support (e.g. health and social care) should continue, but people must stay away if they have COVID-19 symptoms.
- All people coming to your home should wash their hands with soap and water for at least 20 seconds on arrival and often.
- Have an alternative list of people who can help to care for your child if their main carer becomes unwell.
- Contact your local council for advice on how to access care.
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.
People on dialysis are not yet included in the government’s list of those extremely vulnerable from COVID-19. However, the Renal Association is advising that people on dialysis are at extremely high risk and should follow advice on shielding.
Dialysis centres are still open and are providing dialysis. Don't stop going taking your child for dialysis. 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.
If your child is on dialysis and 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 or anyone else in your family develops a high temperature or has a new frequent cough, 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. See gov.uk for full advice on self-isolation.
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).
- your child has CKD or chronic liver disease
- or has had a transplant or is on dialysis, and
- they are not 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.
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.
A summary of government advice to reduce their risk is below. However, you may need to adjust this for 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 and 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.
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 you are extremely high risk and live in England, you can register for a new government service to give you support, for example with getting supplies:
- If your child has had a kidney or liver transplant, tick the solid organ transplant box.
- If he or she is on dialysis, tick the box “a rare disease or inborn error of metabolism that significantly increases your risk of infection”.
You should also receive a letter from the NHS ‘officially’ confirming that you are on the ‘Shielded Patient List’. Most people will have received a letter by 30 March. The NHS is sending out more letters and if you haven’t received a letter, please contact your kidney unit, specialist or GP.
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.
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 of delaying surgery versus risks posed by the COVID-19 outbreak. Your child’s transplant team will be able to provide more information.
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, it’s likely these tests will be postponed.
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 has CKD or chronic liver disease, this is an especially worrying and stressful time.
We encourage you to support one another through our online PKD Charity groups and stay in touch with family and friends by phone or online.
The picture on COVID-19 is changing fast. Check the below websites for the latest information:
Call 111 if you have symptoms of COVID-19. 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 NHS England, Public Health England, the World Health Organization, the European Centre for Disease Control and Prevention, the Renal Association, Kidney Care UK, the British Transplantation Society, NHS Blood and Transplant, The Transplantation Society, European Society of Cardiology, European Renal Association – European Dialysis and Transplant Association, ERN Rare-Liver, and The British Liver Trust. Thank you to Professor Paul Winyard (ICH/GOSH) and Dr Tassos Grammatikopoulos (King's College Hospital) for reviewing this information.
Last updated on 4 April 2020