Treatment aims to protect your child’s kidney function.

Your child may be prescribed blood pressure medication, such as angiotensin-converting enzyme (ACE) inhibitors or angiotensin receptor blockers (ARBs). Your child may be prescribed these medicines if they have protein in the urine, even if they do not have high blood pressure as they help to reduce the amount of protein in your child’s urine.

Several newer medicines such as targeted-release budesonide, SGLT2 (sodium-glucose co-transporter 2) inhibitors and sparsentan can slow IgAN in adults. Your kidney team will discuss whether any of these are suitable for your child.

Lifestyle measures such as losing weight, regular exercise and reducing salt in the diet are important for all people with IgAN.

In most children, kidney function deteriorates slowly. Around 1 in 3 people with IgAN will require dialysis and/or transplant within around 20 years of diagnosis.

Urine testing at home

You may need to do urine tests at home to check for protein and blood in the urine. Your child’s healthcare team will show you how to do this.

Follow up

All children who have been treated for IgA nephropathy need follow-up appointments at the hospital or clinic, to check for any health problems. These may continue throughout childhood and adulthood.

It is important to go to these appointments, even if your child seems well – remember to bring the results from your home urine testing. You will also have the opportunity to ask any questions. At these appointments, your child may have:

• their height and weight checked
• a physical examination
• urine tests – to check for blood, protein and other substances in their urine
• blood tests – to check for the amount of protein and other substances in their blood, and measure their kidney function
• their blood pressure measured.

Long term outcomes

IgA nephropathy is a progressive disease, which means that it does not go away and may get worse over time. The impact on your child’s kidney function (how well the kidneys work) depend on how severe the IgA nephropathy is, and how well it can be controlled by medicines.

Mild disease

For most children with IgA nephropathy, the disease is quite mild. Many children get haematuria (blood in the urine) when they have infections, but it usually does not require any special treatment. Encourage your child to drink plenty of water until the blood disappears.

Acute kidney injury

Children with IgA nephropathy are at risk for acute kidney injury (AKI) – when the kidneys suddenly stop working. Some children with AKI get better after a few weeks, and some need to take medicines or have more intensive treatment.

Long-term problems

Some children will develop longer-term kidney problems, such as high blood pressure, protein in the urine, or reduced kidney function. If the kidneys stop working as well as they should, this usually happens slowly, often over many years. This is called chronic kidney disease (CKD). These children will need to go back to the hospital or clinic for regular follow-up appointments.

If this happens to your child, you will learn more over time about how to help manage the condition, and what to expect.

Impact on your child and family

Children who have IgA nephropathy can usually do the things that other children their age do. They should be able to continue going to school or nursery. They can play with other children and stay active.

Living healthily

Your child can help protect their kidneys by leading a healthy lifestyle through their child and adult years. This includes:

• eating a healthy diet – with at least five servings of fruit and vegetables a day, taking care not to eat too much salt, sugar and fats (especially saturated fats)
• getting plenty of exercise
• not smoking.

Further support

This can be a difficult and stressful experience for your child and the whole family, including other children.

If you have any concerns or need additional support, speak with your doctor or nurse.

For more information on IgAN, including its diagnosis, symptoms and treatment, visit the Leicester IgAN Research Group.

There are currently a number of clinical trials taking place to research further treatment options for IgAN. Talk to your kidney team for more information.