Testing urine at home
While your child is on steroids or immunosuppressants, you will need to test your child’s urine for protein every morning. 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. This is the urine that your child passes when they first wake up 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.
Put the dipstick in the urine sample, remove it and read the result. Use the instructions included in the package.
Record the result in a diary – make sure you include:
- 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 shows either “trace” or no protein for three days in a row, and the swelling goes down, this means that the condition has gone into remission.
Most children go into remission within 6 months of starting the immunosuppressants. Some have a lower level of proteinuria – this is called partial remission.
Relapse
If the urine dipstick shows either 3+ or 4+ protein for three days in a row, this means that there has been a relapse. The kidneys have started leaking protein again, and the symptoms may come back.
Daily testing of your child’s urine will allow you to quickly detect a relapse. Your child will be able to start treatment, often without needing to go into hospital. If the urine tests are not used and your child has a relapse, they may become unwell and develop oedema, and are more likely to need to go into hospital.
If the dipstick shows a relapse, contact your doctor as soon as possible. Your child will need another course of steroids or other immunosuppressants.
Measuring blood pressure at home
You may be asked to measure your child’s blood pressure, using a blood pressure monitor that you can get from your doctor or a pharmacy.
More about measuring blood pressure at home
Your healthcare team will speak with you and your family about any long-term effects your child might have with FSGS and IgM nephropathy. Your child will have follow-up appointments and you may need to monitor him or her at home.
Some children fully recover from these conditions – when the symptoms go away, this is called remission. Others may experience relapses – when the kidneys start leaking protein again and the symptoms reappear. These may be triggered by an infection, such as a cold.
A few children have long-term problems with their kidneys.
Follow-up appointments
Your child will need to have follow-up appointments at the hospital or clinic to check for any health problems.
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.
Long-term effects
Remission and partial remission
Most children with FSGS and IgM nephropathy will go into remission within 6 months of starting the immunosuppressant medicines. Of those children who do not go into remission, some will have less proteinuria – this is called partial remission.
Frequent relapses
Most children have at least one relapse. A few children have frequent relapses – this is called frequently relapsing nephrotic syndrome – and may need further treatment.
Long-term problems
Some children with these conditions may develop a low level of proteinuria (an abnormal amount of protein in the urine).
Some children may have hypertension (high blood pressure), especially later in life.
A few children develop long-term problems with their kidneys – this may be due to the problems with the condition or be a result of the treatment, such as some of the immunosuppressants that are needed. The kidneys stop working as well as they should. This is called chronic kidney disease (CKD). A very small number of children need dialysis and transplantation as a result of FSGS. FSGS may recur (come back) in the transplanted kidney. Your healthcare team will talk to you about this.
If your child has CKD, you will learn more over time about how to help manage the condition, and what to expect.
What you can do
After treatment
Children who have been successfully treated for FSGS or IgM 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 throughout 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.