Your child will need some tests to diagnose (identify) IgA nephropathy, find out more about how it is affecting him or her and whether any treatment is needed. Your child may need an examination, urine tests, blood tests, imaging tests and a kidney biopsy.
Examination
Your doctor will talk to you and your child about his or her symptoms and any medicines that he or she takes. The doctor will examine your child – for example, to see whether there is oedema (swelling in his or her body).
Your doctor or nurse will check your child’s blood pressure. This is because IgA nephropathy may cause high blood pressure (hypertension).
Urine tests
You, or a nurse, will need to collect some of your child’s urine in a small, clean container for a urine test. A dipstick will be dipped into the urine – this is a strip with chemical pads that change colour depending on what substances are in the urine. This shows whether there are blood cells and/or protein, which are signs of IgA nephropathy. The sample may also be sent to a laboratory for more accurate tests.
Blood tests
A small amount of blood will be taken from a vein, with a needle and syringe, for a blood test. A special gel or cream can be used to help your child stop feeling any pain. The blood test results can give the doctor more information, about:
- the immune system, and whether there has been a recent infection
- how well his or her kidneys are working – this is called the kidney function
- the amount of protein in your child’s blood – in IgA nephropathy, the kidneys leak protein into urine and this is sometimes enough to affect how much is in the blood
- the amount of other substances and of types of blood cells
Read more about blood tests for IgA nephropathy
How well the kidneys are working
A blood test can find out the estimated glomerular filtration rate (eGFR), the amount of fluid that the kidneys filter each minute. A low eGFR means that the kidneys cannot filter as quickly, and so are not working as well as normal.
Infection and the immune system
A blood test can check whether there are any antibodies or immunoglobulins – the body’s immune system makes these special proteins to identify and kill specific germs. This gives information about whether there has been an infection, and sometimes which germ caused it.
Some children with IgA nephropathy have high levels of immunoglobulin IgA in the blood.
Protein in the blood
Some children with IgA nephropathy lose a lot of protein in their urine, when it is leaked through the glomeruli. This means there is less protein in their blood, especially a type of protein called albumin. Because albumin is smaller than other proteins, it is more likely to leak through the glomeruli.
Electrolytes
Electrolytes are important chemicals in the body. We need the right balance of these to stay healthy. Some important electrolytes include the following:
- sodium helps balance the amount of water in the body.
- potassium is needed for the muscles, including the heart muscle, to work properly.
- bicarbonate balances the amount of acid in our body, or the pH balance (also called the acid–base balance).
- phosphate is important for bones, teeth and muscles.
- calcium is important for bones and teeth, helps blood to clot and also helps the muscles, including the heart muscle, to work.
Full blood count and blood clotting test
A full blood count (FBC) counts the numbers of different types of blood cells – a higher or lower level of these may be a sign of infections or other health problems.
A blood clotting test looks at how the blood forms clots, when the blood clumps together – for example, when we have a cut, to stop the body losing too much blood.
Imaging tests
Some children need imaging tests (scans). These use special equipment to get images (pictures) of the inside of their body.
- Ultrasound scan - looks at look at the shape and size of kidneys and other parts of the urinary system. A small handheld device is moved around your child’s skin and uses sound waves to create an image on a screen.
- Chest X-ray - for children with breathing problems, this test checks for any fluid (liquid) around the lungs,. Your child sits or lies still for a few seconds while a machine takes X-ray images.
Occasionally, other imaging tests are needed.
Kidney biopsy
Your doctor can diagnose IgA nephropathy with a kidney biopsy, and may recommend this test. A tiny piece of one kidney is removed from the body with a needle, and examined under microscopes. Special medicines are used so your child does not feel any pain or can sleep through the procedure.
A kidney biopsy can give more information about how much damage there is in your child’s kidney, and confirm whether he or she has IgA nephropathy or another type of glomerulonephritis. It can take a few weeks to get the results.
Children with IgA nephropathy may not need any treatment, but will be monitored by a healthcare team.
Your child may need to make temporary changes to what he or she eats or drinks. Your child may need to take medicines to reduce the amount of protein lost in the urine and/or treat high blood pressure. Other medicines may be needed – for example, to treat swelling of the body, or treat infections.
A small number of children will need further treatment if their kidney function gets worse, such as medicines or dialysis, which uses special equipment to remove waste from the body.
It is important that your child follows any treatment plan outlined by your doctor.Do not give your child ibuprofen (e.g. Brufen) – this medicine may cause further damage to kidneys that are affected by IgA nephropathy.
Where will my child be treated?
Your child will probably be referred to a paediatric renal unit, a specialised unit that treats babies, children and young people with kidney conditions and may be in a different hospital from your own. He or she will be looked after by a team, including a paediatric nephrologist, a doctor who treats children with kidney problems.
Visiting or staying in hospital
Most of the time, children with IgA nephropathy have their care as outpatients. This means that they visit the hospital during the day and go home.
Your child may need to stay in hospital for a few days or longer. Your child can go home when the doctor thinks that his or her health is stable.
Read more about what happens in hospital and your child’s healthcare team
Hospital visit
A team of healthcare professionals will:
- check your child’s kidney function (how well his or her kidneys are working)
- measure how much your child is drinking and how much urine he or she is passing
- test your child’s urine with a dipstick
- check your child’s blood pressure
Healthcare team
Your child’s healthcare team may include a:
- paediatrician – a doctor who treats babies, children and young people
- paediatric nephrologist – a doctor who treats children with kidney problems
- radiologist – a healthcare professional who uses imaging tests (scans) to help identify a condition
- renal nurse – a nurse who cares for children with kidney problems
- renal dietitian – a healthcare professional who advises what your child should eat and drink during different stages of a kidney condition
- renal social worker – a professional who supports you and your family, especially with any concerns about money, travel and housing related to looking after your child with kidney disease
- renal psychologist – a healthcare professional who supports your child and family, especially with emotional stresses and strains from having to look after a child with kidney disease
- play specialist – a professional who uses dolls and other toys to help your child prepare for procedures, such as blood tests and dialysis
Changes to eating and drinking
Your child may need to make temporary changes to what they eat – for example, less salt and less of certain foods. Your child may also need to drink less fluid, such as water, squash and soft drinks. Your doctor, nurse or a paediatric dietitian will help you and your child make these changes.
Reducing protein loss in urine and controlling blood pressure – ACE inhibitors and ARBs
Some children need to take medicines to reduce the amount of protein lost in their urine and/or control their blood pressure. These are usually medicines called angiotensin-converting enzyme inhibitors (ACE inhibitors) or angiotensin-II reception blockers (ARBs). Common medicines are: captopril, enalapril and lisinopril.
Doctors understand that, in some children, these medicines will reduce the risk of long-term kidney problems.
It is important that you follow your doctor’s instructions about when and how much to give. Do not stop the medicine suddenly
Treating infections – antibiotics
If your child has an infection, such as a throat infection, he or she may need to take an antibiotic, a medicine that kills bacteria. One infection is tonsillitis, when the tonsils in the back of the throat become inflamed (swollen).
In some children, throat infections that keep coming back may trigger haematuria (blood in the urine). If your child has throat infections and urine that is coloured red or brown (like a cola drink), discuss this with your doctor at the next outpatient appointment. Your child may need to be referred to an ear, nose and throat (ENT) healthcare professional for further tests and treatment.
It is important that your child completes the course of antibiotic. This means that he or she must take the medicine for the number of days that the doctor has told you to, or until all of the medicine has been taken.
Reducing swelling – diuretics
Occasionally, children with IgA nephropathy need to take diuretics, medicines that help reduce oedema (swelling in the body). Diuretics work on the kidneys to increase the amount of water and salt they remove from the body in urine.
If your child is taking diuretics, he or she will need to go to follow-up appointments. Your doctor will examine your child for oedema and measure his or her weight. This helps find out how well the medicine is working.
Common diuretics are: furosemide, spironolactone and metolazone. Some of the other diuretics that may be used are: amiloride, bendroflumethiazide and chlorothiazide.
Managing reduced kidney function
For some children, the kidneys do not work as well as normal during this illness – they have reduced kidney function. The severity of this varies, but most do not need any special treatment and their kidney function will return to normal. A very small number will have more serious kidney problems and will need further treatment. This may include:
- taking medicines called immunosuppressants, which stop the immune system from working properly to try to stop it from harming the kidneys
- dialysis, which special equipment or a machine to ‘clean’ the blood, removing waste products and extra water and salts.
Questions to ask the doctor or nurse
- What treatment does my child need?
- How will the treatment help my child?
- How can I help my child prepare for procedures and treatments?
- If the first treatment does not work in my child, what happens next?
- How will I know if we need to go back to the hospital or see the doctor?
- Will the IgA nephropathy come back? How will I know?
Your healthcare team will speak with you and your family about any long-term effects your child might have with IgA nephropathy.
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 sometimes 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:
- his or her height and weight checked
- a physical examination
- urine tests – to check for blood, protein and other substances in his or her urine
- blood tests – to check for the amount of protein and other substances in his or her blood, and measure his or her kidney function
- his or her blood pressure measured.
Will my child get better?
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 this is usually of no real significance and 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
About three or four children in 10 with IgA nephropathy will have long-term problems with their kidneys. The kidneys stop working as well as they should – this happens slowly, often over many years. This is called chronic kidney disease (CKD). These children may need further care. They 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 his or her 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.