Children on dialysis are very special, and so are their carers. Chronic kidney disease can affect babies through to teenagers. There are specialised children dialysis units around Australia to provide support, training and care.
Many children with chronic kidney disease will get a kidney transplant, but until then dialysis is the treatment option.
Peritoneal dialysis (PD) is usually the treatment of choice for children. It’s gentle and can be done overnight.
Haemodialysis (HD) is chosen less often for children, but is an effective treatment. Usually it’s centre-based rather than Home HD.
Dialysis units for children are located around Australia. Find the one closest to you here.
If you have chronic kidney disease a healthy lifestyle is very important. When your kidneys are sick, or you’ve had a transplant, or are on dialysis, then exercise, good food, the right drinks and general wellbeing are all important.
’Kidney failure and Kids’
This series of short videos introduces six young people who found out they had chronic kidney disease. They talk about when they learned the news and how they got on with their lives. In this video they relate their experiences with the different types of dialysis, and describe how receiving a transplant kidney has improved their lives. We’re grateful to the six young people who kindly gave their time to help us make this video.
You can download these stories
Kidney failure and kids: dialysis and transplants
Kids on dialysis: starting treatment
Kids on dialysis: lifestyle and top tips
Kids on dialysis: connecting with social media
‘Moe’s Sick Kidneys’ – a good story and activity book for younger kids. Order it here.
‘Kidney Kidnections’ – collection of stories about children, their families and nurses and their chronic kidney disease. Order it here.
Child carer support
If you’re a parent or part of the support team for a child with chronic kidney disease, there are times when you may need support yourself.
What it’s like for a child on dialysis
This summary of available research may help you understand what your child might be going through in having to do dialysis. From 17 studies that reported on the experiences of 143 children doing dialysis, five major themes were identified:
- Loss of control (high reliance on carers, parental over-protectiveness, unrelenting dependence on a machine, impaired body integrity).
- Restricted lifestyle (limited socialisation opportunities, academic struggle).
- Coping strategies (hope for kidney transplant and medical advances, social support, positive determination and self-awareness, engaging in activities, denial).
- Managing treatment (ownership, proactive involvement, adherence to fluid and diet restrictions).
- Feeling different (abnormal physical appearance, injustice, being a burden).
Children doing dialysis experience impaired growth, invasive procedures, and educational and social constraints. They often have poor self-esteem and a pervasive sense of losing their identity, body integrity, control, independence and opportunity.
To achieve improved health and treatment outcomes, the recommendation is to initiate actions that equip children with the capacity to manage their health, be part of the community, engage in ‘permissible’ recreational activities, progress in their studies, and remain vigilant in their dialysis and treatment responsibilities.
(Reference: Lidwien Tjaden, Allison Tong, Paul Henning, Jaap Groothoff, Jonathan C Craig (2011) Children’s experiences of dialysis: a systematic review of qualitative studies Child doi:10.1136/archdischild-2011-300639)
If you have to give up work to support your child it may lead to financial difficulties. The dialysis healthcare team, or a social worker, can offer advice.
Carers of children under the age of 16 may be eligible for carer payments. For more information, phone Centrelink on 132 717 or visit their website here.
Further funding and reimbursements may be available for children on dialysis. Find out more here.
Respite care is limited but ask the dialysis healthcare team or a social worker if there are any services in your area. Friends and volunteer associations may also offer services or support.
Taking time out
It’s important to give a child with an illness the attention they need, but it’s also essential to have good relationships and experiences with your family as a whole.
That means making sure you spend adequate time with your other children and your partner and also taking time out for yourself.
Don’t feel guilty about letting go. Studies show that many kids on dialysis feel overprotected. To grow up healthy they need to take ‘safe risks’ and experience ‘controlled failure’, the same as we all do.
Trusted people can be found to provide support with child minding, assist with dialysis, or even just help around the house by doing basic chores.
If you’re feeling overwhelmed or think you may be depressed, the dialysis healthcare team may be able to provide support or refer you to a helpline or psychologist, so please talk to them regularly. You can also see more about advice and support for emotional issues here for more information.
Peritoneal dialysis (PD)
When you have chronic kidney disease as a child, PD is usually the treatment of choice. It’s gentle and can be done overnight, using a machine called a cycler. The dialysis is done every day.
When you’re not doing dialysis you can play and go to school. You can usually eat and drink the same things as all your friends. The only activity your PD nurse needs to approve, is swimming.
The need for PD
When your kidneys are sick your blood doesn’t get cleaned. You feel tired and struggle to do lots of activities in the day. PD takes the place of the kidneys and cleans the blood in a special way.
A catheter is a tube that’s put into your abdomen (stomach) in a space called the peritoneum. The doctor will give you medicine so you’ll be asleep when the catheter is put in. The catheter stays in place and a bandage is put on to help keep it clean.
Dialysis with bags (CAPD)
One way to do dialysis is with special bags. This is called CAPD. When you do the dialysis, the catheter is attached to a bag of dialysis fluid, and also to a drain bag.
First, the old fluid is drained out of the peritoneum. Next, a small amount of new fluid is put in. It might make your stomach feel a bit full but it doesn’t hurt. After the new fluid is put in all the bags are removed. The fluid then cleans your blood.
CAPD has to be done three or four times a day at regular times, like at breakfast, lunch time, after school and bedtime. It takes about half an hour, enough time to read a book, surf the net, eat a meal or do your homework.
Children rarely do CAPD, usually doing the machine version of dialysis (APD) overnight.
Dialysis with a machine (APD)
The other way to do dialysis is with a machine (a cycler). This is called APD. Most kids use this method. You have your own cycler next to your bed. The dialysis happens while you are sleeping. The fluid will go in and out about five or six times.
Here are four animated videos that quickly show how APD fits into your day. You will need Adobe Flash Player installed to view these animations.
Prepare and prime the machine
Getting read for bed
Exchanges through the night
Good morning and disconnect
When you have chronic kidney disease as a child, HD is not the first choice as a treatment, but it can be effective.
Usually HD is done at hospital rather than home. You have to go at least three times a week, for the whole morning or afternoon. If you’re older you may be able to do Home HD but you still need to do at least the same amount of dialysis.
When you’re not doing the dialysis you can go to school, run around and play. You may need to be careful and not have too much of certain drinks and foods.
The need for HD
When your kidneys are sick your blood doesn’t get cleaned. You feel tired and struggle to do lots of activities in the day. HD takes the place of the kidneys and cleans the blood in a special way, using a machine.
Your dirty blood goes through special tubes on the machine to get to what’s called the dialyser, and then comes back to when it’s clean.
When you’re on dialysis you can’t move around, but you can read, play with toys, do schoolwork, watch TV, and use mobiles, computers and iPads.
How the blood gets out of your body to be cleaned
The nurse uses a special needle, which is put in your dialysis access point, usually in your arm. A pain-killing cream is applied first so you can’t feel the needle. After your dialysis is finished the needle is taken out and a bandage is put on your arm for a while.
‘Danielle on Haemodialysis’
This inspiring video tells the story of Danielle, who is eight years old and doing HD at a clinic in America. There’s lots of interesting information about dialysis from a kid’s point of view. The methods and machines are different to those in Australia but the principles are similar.
‘Lisa and Alexander’s Stories on Haemodialysis’ – Monash Children’s Hospital, Victoria. Click here.
Kids support network
Kids support networks
There are many support networks for children with chronic kidney disease and their families. The opportunity to attend special kids days out, kids camps and link up with other children through specially monitored chat rooms are just some options. You can see more about support networks here.
We organise special ‘Kidney Kids’ events in most states and territories of Australia. An example is Kidney Kids Capers, which are fun-filled days for children and teenagers aged seven to seventeen. These days include different sorts of activities and also offer opportunities for you to meet other children who are living with kidney disease, together with your parents and brothers and sisters.
Another favourite event if you’re aged from seven to seventeen is our annual Kidney Kids Camps, which run for four days. If you’d like to get away with your brothers and sisters, and about 100 other kids, find out more about these events here.
School & dialysis
School and dialysis
When you’re young, school is a big part of your life. It can be tricky at times for anyone, but when you have a chronic disease it can get even trickier.
Hospitals have very good systems to help you with education when you’re sick. In this section we give some advice about school and learning while you’re doing dialysis.
Type of school
You can go to any school. When you are not doing dialysis you’re free to get involved in all the normal activities of school – and that includes homework.
Your kidneys might be sick but your brain is still working. There’s nothing to stop you learning, and you can study and do your homework while you’re doing dialysis. Some days you may not feel as bright as others. If you have to miss a lot of school, you might fall behind if you don’t make up the work. Talk to your teachers if you feel you need extra help.
Turning up to school
You should have energy for school if you follow the dialysis nurse’s instructions for a healthy lifestyle and do your dialysis properly.
Like anyone else, you might get another illness that stops you getting to school, and now and again you may have a bad night and need a day off, but whenever possible you should go to school.
Help at school
Your school will know you have chronic kidney disease and are doing dialysis. Your class teacher will understand if you have any problems and need to talk to someone.
Most schools also have a school nurse and possibly a counsellor or chaplain. All of these people are there to help you, so always let them know if you have any worries and need support.
Letting school-friends know
You may choose to tell your friends at school about your special condition. Most will be interested in how you’re getting on and will want to help you do well. Those who don’t might not be the right friends for you. Remember everyone is different in some way. If you don’t feel comfortable at school, talk about it with your parents and your teacher, or any of the other adults who can help you.
Fun with friends
By attending our Kidney Kids Camp, Capers and events, you can meet other kids with chronic kidney disease and share experience and ideas about school and dialysis. You could make some very good friends.
Bullying can happen to anyone, and your school should have a ‘no bullying’ policy. Bullies are often weak people with problems of their own. They may even be jealous if they think you’re getting special attention because of your dialysis. Any bullying must not be allowed to continue. If you’re being bullied, talk about it to your parents, your teacher and other adults you can trust, and they can help you sort it out.
You may find this DVD helpful - download Kids on dialysis: friendship and school.