Treatment for CKD depends on the stage and symptoms that your child has.
Early stage CKD (one to three)
If your child has mild CKD (stages one to three) and their kidney function is stable, they are unlikely to need any specific treatment. They will probably be monitored by a paediatrician, a doctor who treats babies, children and young people with different conditions, who may be based at your local hospital or in another healthcare setting. Your child may also have some appointments with your family doctor, or general practitioner (GP).
Controlling blood pressure
It is important that your child’s blood pressure is controlled so it is in the healthy range. Even at early stages, children are at risk of hypertension (high blood pressure), which can cause further damage to their kidneys and may speed up progression to later stages of CKD. Your child may need to eat a no-added salt diet and/or take medicines to control their blood pressure.
Reducing protein loss in urine
If your child has a high level of protein in their urine (proteinuria) they may be prescribed angiotensin-converting enzyme (ACE) inhibitor or angiotensin-II reception (ARB) blocker medications. Research suggests that, in some children, these medicines will slow the progression of their CKD.
You will be given advice on how your child can live healthily to protect their kidneys. This includes:
- Eating a healthy balanced diet.
- Taking regular exercise.
- Keeping up to date with their vaccinations. When your child has kidney disease, they are more likely to get other illnesses and take longer to recover. This can make their kidney function worse, so it is important to get treatment early. Ask your GP about having flu, pneumonia and Covid-19 vaccinations.
- Checking their blood pressure regularly. Your GP can teach you and your child how to do this at home.
- Some over-the-counter and prescription medicines can make your child’s kidney disease worse. Always tell your doctor and pharmacist that your child has kidney disease and check that the medication they are given is safe to take.
Do not stop or change any medication without taking medical advice.
Later stages of CKD (four to five)
More severe CKD (stages four to five) is likely to need specialist treatment. Your child will normally be referred to a paediatric renal unit, a specialised unit for babies, children and young people with a kidney condition. A team of healthcare professionals supports these children and their families throughout these stages.
Dietary changes
As your child’s kidneys work less well, they are less able to control the amount of water, salts and nutrients in their body. Some foods that are high in salt, potassium and phosphate can be harmful to your child’s kidneys. A dietitian can give you specialist advice on how you can adapt your child’s diet if needed. Some children and babies develop a poor appetite and may feel sick (nausea) or be sick (vomit). They may need to be fed through a tube to make sure they have the nutrition they need to grow.
Feeding your baby or child with CKD
Medicines
Children will need to take medicines to treat the symptoms of the later stages of CKD or to try to slow down the progression to kidney failure. The types or doses (amounts) of medicines are likely to change as your child grows. Some medicines are given by mouth whereas others are by injection.
In stage 5, the kidney function is very low, and the kidneys can no longer support the body – this is called kidney failure. It usually takes many years for a child with CKD to reach stage 5, although this can vary. Stage 5 occasionally happens when a child is very young, but it is more likely to happen later in life, especially during puberty when children’s bodies grow quickly, or in early adulthood.
Many children with kidney failure need dialysis, which uses special equipment to remove waste products and extra water from their body.
The best treatment for kidney failure is a kidney transplant, where a healthy kidney from another person is transplanted into your child’s body. After a successful transplant, children can live full and healthy lives but will need to take medicines for their rest of their lives to look after the new kidney.
Your kidney team will give you support and advice to help you understand your treatment options.
Questions to ask the doctor or nurse
- What treatment will my child need, and when?
- How will the treatment help my child?
- How can I help my child prepare for tests and treatments?
- How will you know whether my child is likely to go into later stages of CKD?
- How will I know if we need to go back to the hospital or see the doctor?
Supporting your child
This can be a difficult and stressful experience for your child and the whole family, including other children. You and your child will learn more over time about how to help manage and live with CKD.
Your child’s healthcare team is there to help you. They can provide support with your child’s education, accessing financial benefits and planning holidays around tests and treatments. There may also be help available from a team social worker and/or psychologist.
Speaking with other families of children with CKD can also be a huge support.
If you have any concerns or need additional support, speak with your doctor or nurse.
Transition to adult services
When your child becomes a teenager, they will prepare to transfer from paediatric services (for children) to adult services. The timing is different for everyone although many children will start being looked after by an adult nephrology unit by the time they are 18 years old.
Many units have a transition programme, which starts some years before the transfer, to help teenagers to prepare to take more control over their own healthcare.
Impact on adult life
Your child will need to take care of their health throughout life. As an adult, they will be supported by a new healthcare team. They should be encouraged to live a full and fulfilling life and go on to further education, work and having a family if they wish.