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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 natural to worry if you have a child with kidney disease. Parents often have questions about their child's health. This page answers some of the most common ones.

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 from living donors.

Living organ donation is when someone, usually a close relative or friend, donates an organ to someone else while they're still alive.

The relative is usually blood related - a parent, brother, sister or child. If you're healthy, you can lead a completely normal life with only one working kidney.

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 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 develop at the same rate 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 children with kidney disease get enough nutrition. Talk to your child's doctor or dietitian 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.

A child with kidney disease may also feel their condition 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're 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, can help encourage them to make friends.

Will my child have difficulties at school?

Kidney disease can cause learning problems because the build-up of waste products in the body can affect brain function.

Children who have had the condition from a young age may also spend so much time in hospital that they can 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 gets as much extra educational support as possible from their school. The hospital teachers can also help and advise you.

Talk to your child's teacher if you're concerned about your child's development or learning.

Read more about long-term health conditions at school.

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. But if your child is on dialysis, swimming might not be possible.

In some cases, particularly after a kidney transplant, children should avoid contact sports.

Speak to your child's doctor about which activities your child can safely do. They should be able to take part in most sports. 

Read about 10 ways to get active with your kids.

Kidney Care UK organises activity holidays for children with kidney disease.

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 them.

How to help

Try to work out why your child doesn't want to take their medicines.

Children, particularly teenagers, may stop taking them 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. But be careful not to scare your child. 

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 your child's renal team. They'll have experience of tackling this problem with other children and young people.

It's very important to let the renal team know immediately if you think your child isn't taking their medicines. They need to know this, and may have some suggestions to help.

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 or local support group. Kidney Care UK also provides a counselling and support service.

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.

Article provided by NHS Choices

See original on NHS Choices

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