The long-term outcome for children with FSGS depends on whether it is due to a genetic mutation.
If the FSGS is caused by a genetic mutation:
- One in 10 children will respond at least partly to treatment
- Nine out of 10 children will not respond to treatment
- All will have long term monitoring and follow up
If the FSGS is not caused by a genetic mutation:
- Six out of 10 children will respond completely to treatment and go into full remission with no further protein leakage.
- Two out of 10 children will have a partial remission but will still have ongoing proteinuria.
- Two out of 10 children will not respond to treatment at all and will have long-term problems with their kidneys.
Relapses
Most children have at least one relapse 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 frequent relapses – this is called frequently relapsing nephrotic syndrome – and may need further treatment.
Follow-up appointments
Your child will need to have follow-up appointments at the hospital or with their GP to check for any long-term health problems.
It is important to go to these appointments, even if your child seems well. 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 effects
Your child’s healthcare team will tell you about any long-term effects your child might have with FSGS.
Some children may have a continued low level of proteinuria.
Some may have hypertension (high blood pressure), especially as adults.
A very small number of children develop kidney failure and will need dialysis or transplantation. The risk of developing kidney failure depends on:
- response to treatment (whether the protein leak reduces)
- type of FSGS (primary or secondary)
- how severe the initial protein leak is
- your child’s age when FSGS is diagnosed
- any underlying genetic causes
Your child’s healthcare team will talk to you about this and will provide lots of support.