Helping your child live with kidney disease

Having kidney disease affects children in many ways. They may need to take medicines and alter their diet, and can also face challenges at school.

It's only natural to worry if you have a child with kidney disease. Parents often have questions about their child's health. We answer some of the most common ones.

It can be helpful for parents to talk to members of the renal team, such as the social worker or clinical psychologist. Other parents and patient support groups may also be able to help.

Can I give a kidney to my child?

As a parent, your first instinct may be to deal with your child's condition by giving them one of your kidneys. Around half of all kidney transplants carried out are now from living donors.

Living organ donation usually involves one family member donating an organ to another family member or a partner. The relative is usually blood related – a parent, brother, sister or child. It's possible for a healthy person to lead a completely normal life with only one working kidney.

Considering donating a kidney is a big step. It's major surgery, and will only go ahead once strict rules are met and after a thorough process of assessment and discussion. Talk to your child's renal team if you want to explore whether donation could be an option for you and your child.

Will my child grow normally?

The kidneys play an important role in a child's growth, so children with kidney disease may not grow as well as their peers. To make the problem worse, their illness can make them feel sick, alter their sense of taste and reduce their appetite.

How to help

It's important to make sure that children with kidney disease get enough nutrition. Talk to your child's doctor about ways to help boost growth. Taking supplements and limiting certain foods while eating more fats and carbohydrates to increase calorie intake can help. Some children benefit from injections of growth hormone.

Will my child have a problem making friends?

Children with kidney disease can have trouble making friends and fitting in with children of their own age. This can be because they miss time off school.

It can also be because of a child's natural concern that their kidney disease makes them different from other children. Children can lack confidence if they're small for their age and their appearance has changed (for example, if they are bloated) as a result of their condition and its treatment. 

How to help

Find ways to encourage your child to meet other children and make friends. They can meet other children through nurseries, playgroups, school and after-school clubs. Having children over for tea and sleepovers and, in the case of older children, using social networking sites, such as Facebook, can help encourage them to make friends.

Will my child have difficulties at school?

Kidney disease itself doesn't usually cause problems with learning, but children who have had kidney disease from a young age may spend so much time in hospital that they struggle with schoolwork. They usually catch up as they get older.

How to help

If your child misses school, do all you can to help them with their schoolwork. Talk to their teachers as early as possible to make a homework plan that your child can get on with while they're in hospital.

Make sure your child is getting as much extra educational support as possible from the school. The hospital teachers can also help and advise you.

If you have concerns about your child's development or learning, talk to your child's school.

Read more about how to talk to the school about your child's health condition.

Should children with kidney disease do sport?

It's tempting to be overprotective of a sick child. In general, sport and exercise is great for children with kidney disease. But bear in mind that they may get tired more easily than their friends and classmates. 

How to help

Encourage your child to do all the activities their friends do. If your child is on dialysis, swimming might not be possible. In some cases, particularly after a kidney transplant, children should also avoid contact sports. Otherwise, they can safely take part in most sports. 

Find out 10 ways to get active with your kids.

The British Kidney Patient Association (BKPA) organises activity holidays for children with kidney disease. Ask your child's doctor about these, or visit the BKPA website.

What if my child refuses their medicine?

Taking medicines is part of life for most children and young people with kidney disease. They can find this a strain and may stop taking their medicines.

How to help

Try to work out why they don't want to take their medicines. Children, especially teenagers, may stop taking their medicines because they can cause unflattering changes in appearance.

Talk to them about why taking their medicines is important for their health and what will happen if they don't. Be careful not to scare your child into taking their medicines. 

Explaining to older children and teenagers why they need to be responsible for taking their own medicines can make them more likely to keep taking their tablets.

It can also help to involve the renal team that's looking after your child, as they will have lots of experience of tackling this problem with other children and young people.

It's very important that you let the renal team know immediately if you think your child isn't taking their medicines.

Who can my child talk to about kidney disease?

All children's kidney teams have different professionals on hand to chat to your child. These include doctors, nurses, psychologists, social workers, play specialists, teachers and some youth workers.

How to help 

Arrange for your child to talk to a member of the kidney team. It can also help if they meet a young adult who had chronic kidney disease during childhood, or another child of their own age. You can find contacts through your doctor, local support group, or the British Kidney Patient Association (BKPA).

How do I explain kidney disease to my other children?

Brothers and sisters of children with kidney disease may feel left out and worried. They need time with you to talk over their worries and feel part of the overall plan. 

How to help

Your child's kidney team is there to help the whole family. Ask the play specialist, psychologist or social worker to spend time talking to your child's brothers and sisters and answering their questions.

Page last reviewed: 20/03/2015

Next review due: 20/03/2017

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