Nephrotic syndrome: monitoring treatment
Most children with nephrotic syndrome will start to get better after taking steroids for 1 to 2 weeks. In about 9 in 10 children, the nephrotic syndrome will have responded to the steroids within 4 weeks.
It is important that you continue giving the steroids to your child as your doctor has told you, even if your child is getting better. Stopping steroids suddenly can make your child very unwell, so you should only stop taking steroid medicines on the advice of your doctor.
Testing urine at home
You will need to test your child’s urine for protein every morning – while your child is on steroids, and then for at least 6 months. Your doctor will let you know how often to test the urine and when you can stop.
When to do the urine tests
Some children, even when they do not have nephrotic syndrome or another kidney problem, have a very small amount of protein in their urine after standing or sitting upright for a few hours. For this reason, it is best to get a sample of your child’s first morning urine, the urine passed when they first go to the toilet in the morning.
How to do the urine tests
You will be given dipsticks – these are strips with chemical pads that change colour depending on what substances are in the urine. A nurse will show you how to use them.
Older children can urinate over the dipstick. For younger children, you can get a sample of urine from a potty.
Recording the results
Read the result, using the instructions included in the package. Write in a diary, including:
- the date
- the urine test result
- any medicines taken (e.g. steroid and dose, or amount)
- any comments about your child’s health (e.g. feeling unwell)
Bring the diary to your next clinic visit.
Remission
If the urine dipstick will show either “trace” or “negative” for protein for three days in a row, the nephrotic syndrome has gone into remission. The kidneys have stopped leaking protein.
Relapse
If the urine dipstick shows either 3+ or 4+ protein for three days in a row, the nephrotic syndrome has relapsed. The kidneys have started leaking protein again.
If the dipstick shows a relapse, contact your hospital doctor as soon as possible.
More than half of children with nephrotic syndrome have at least one relapse. By regularly testing your child’s urine, you can quickly detect a relapse. Your child can start treatment, often without needing to go into hospital. If the urine tests are not used and your child has a relapse, he or she may become unwell and develop oedema, and is more likely to need to go into hospital.
Follow-up appointments
Your child will need to have medical assessments in the clinic. It is important that you bring your child to these follow-up appointments even if they seem well. You will also have the opportunity to ask any questions. Remember to bring your records of the home urine testing.
At these appointments, your child may have:
- their height and weight checked
- a physical examination
- urine tests – to check for protein and other substances in their urine
- blood tests – to check for the amount of protein and other substances in their blood; blood tests may also be used to check their kidney function (how well their kidneys are working)
- blood pressure measurements.
Relapses
About half of children with SSNS will have at least one relapse – when the nephrotic syndrome comes. Many two or three relapses. Often, these relapses can be successfully treated with another course of steroids.
In most children, the SSNS tends to relapse less often as they grow into their teenage years. It is rare that SSNS continues to relapse in adulthood.
Frequent relapses
A few children have frequent relapses – when the nephrotic syndrome keeps coming back. This is called frequently relapsing nephrotic syndrome
If this happens, your doctor will consider the best treatment for your child. For example, they may take a small amount of the steroid prednisolone every other day to prevent relapses. If that does not work, they may need to take other, stronger medicines.
Referral to a paediatric nephrologist
Some children are referred to a children’s kidney specialist called a paediatric nephrologist. These children may need more tests such as a kidney biopsy or more specialised treatment.
This may happen if:
- your child has frequently relapsing nephrotic syndrome
- your child’s nephrotic syndrome does not get better within 4 weeks of taking steroids, or your doctor thinks that your child has a rarer type of nephrotic syndrome, for example, caused by the conditions focal segmental glomerulosclerosis or IgM nephropathy.
Impact on your child and family
Children who have nephrotic syndrome can usually do the things that other children their age do, including during relapses. After a hospital stay, they should be able to continue going to school or nursery. They can play with other children and stay active.
If your child is in contact with measles or chicken pox, tell your hospital straight away.
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.
Getting 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.