CKD: nutrition and growth

What happens

All babies, children and young people need to eat a healthy, balanced diet to grow and develop.

Children in later stages of CKD may develop a poor appetite, and not be able to eat as much. They may feel sick (nausea) or be sick (vomit) because of the effects of CKD and/or the medicines they need to take. They may also be more tired than usual and have low levels of energy.

Uraemia

The kidneys are less able to remove waste products into urine – one of these is called urea, which is made by the body as we eat food. Too much urea in the blood is called uraemia. Some children with CKD have symptoms of uraemia, though these are very rare. They include:

• feeling sick
• feeling cold
• feeling itchy
• feeling breathless
• rarely, seizures.

Your child’s healthcare team will look out for these signs.

The kidneys are less able to control the amounts of vitamins, minerals and other chemicals that are important for our health. Having too much or too little of certain chemicals may cause complications.

High cholesterol

Rarely, children with CKD develop a high level of cholesterol and/or triglycerides, which are fats in the blood, even with a healthy diet.

Your child will have regular blood tests to monitor this.

Treatment

It is important that your baby or child with CKD feeds or eats well. Good nutrition is essential for their growth and healthy brain development. It gives children with CKD strength to fight illness and infections.

Some children with CKD struggle with eating. They will need extra support to make sure they get the energy and nutrients they need to grow and stay healthy.

Changes to diet

Your child will probably need to follow a diet that is specially designed for him or her. This will include restricting (or sometimes avoiding) certain foods that have a high amount of some electrolytes, because the kidneys are less able to remove them into urine.

Your child will have regular blood tests to find out the levels of these electrolytes. As your child’s kidney function gets worse, he or she may need a more restricted diet.

Your paediatric dietitian will help you design meals that are right for your child. It can be difficult at first to know which foods have a large amount of these nutrients, and which your child can and cannot eat – but you will quickly learn.

The diet that your child needs may be very different to the healthy eating advice for children who do not have CKD. Eating less salt may be good for the whole family. However, make sure that other children continue to eat a normal, balanced diet.

More about Feeding your baby or child with CKD

Nutritional supplements

To make sure your child has enough protein and energy, and the right vitamins and minerals, he or she may be prescribed one or more supplements. These may be made up as a drink, as powder or granules to mix into water or squash, or as a tablet or liquid medicine. They are just as important as medicines, and need to be taken as your doctor or dietitian advises.

Vitamin D

We get vitamin D mostly from sunlight on the skin, but it is also in some foods (such as oily fish, eggs and breakfast cereal with added vitamin D). The kidneys are needed to convert this vitamin D into a form the body can use. Activated vitamin D helps control the amount of calcium and phosphate in the blood, and so help keep bones and teeth healthy.

In CKD, the kidneys are less able to activate vitamin D. Many children need to take supplements with a form of vitamin D that the body can use.

Feeding devices

If your baby or child is unable to eat and drink all he or she needs to grow and develop, he or she may need a feeding device. Some, or all of your child’s nutrition, and water and medicines, can be given through a tube.

This is often called tube feeding. It is different from oral feeding, which is by mouth. Your child’s dietitian can discuss this with you in more detail.

Read more about feeding devices

Types of feeding devices

There are several types of device, with different advantages and disadvantages. Your doctor will discuss these with you before a decision is made.

• Nasogastric tubes are normally for short-term use. They are long, thin tubes that are placed through the nostril, down the throat and into the stomach. The feeds are given through the tube to get to the stomach. Sometimes the child pulls the tube out and it needs to be replaced. After training, most parents and carers are able to replace the nasogastric tubes themselves.
  
• Nasojejunal tubes are occasionally used instead. These are long, thin tubes that are placed through the nostril, down the throat and into the small intestine (just past the stomach).
• Gastrostomy is sometimes considered for long-term use. In this procedure, a small hole (called a stoma) is made through the abdomen’s (tummy’s) skin and into the stomach. Feeds are given through a gastrostomy button or a gastrostomy tube – the gastrostomy tube can stay in for years if needed. The gastronomy tube and button do not become easily dislodged. It is also more discreet as it cannot be seen when the child has clothes on.

Types of feeds

There are two ways to feed your child, using either a nasogastric tube or a gastrostomy. Both can be done at home.

• Bolus feeds are done at regular times of the day. A syringe is attached to the feeding tube or button. The feeds flow by gravity into your child’s stomach, for 15–20 minutes each time.
• Pump feeds are done for longer periods of time and at a slower rate. An electric pump is attached to the feeding tube or button, and the right amount of feed is slowly given over the set time – this is usually overnight but can be over 24 hours.

More about coping with tube feeding in Feeding your baby or child with CKD

Medicines for high cholesterol

Occasionally, medicines that help reduce the amount of cholesterol or other fats may be needed. These are usually statins, medicines that reduce the amount of cholesterol the body makes.

Growth

CKD may affect your child’s growth.

Your child will have regular blood tests that check the levels of some hormones, chemicals that are carried in the blood to send messages to other parts of the body. 

He or she will also be measured and weighed, and may have X-ray tests to find out how he or she is growing.

Hormone specialists

Your child may be referred to a paediatric endocrinologist, a doctor who specialises in treating children with hormone problems. The endocrinologist can examine your child and may need to arrange more tests, such as special blood tests, to find out more.

Growth hormone – medicine

Hormones called growth factors help the body to grow. In CKD the levels of growth factors may be normal, but may not be producing normal growth. Some children with severe CKD may need extra growth hormone as a medicine. This needs to be injected under the skin once a day. You may be given information about how to give the injection at home. Many children learn how to administer it themselves.

Some children experience side-effects when taking growth hormone, though these are very rare. They may include headaches, visual problems, nausea and vomiting, and puffy legs due to more fluid retention. If you are concerned, speak with your doctor.