A parent notices their three-year-old’s eyes look swollen at breakfast, puts it down to a poor night’s sleep or dust in the room, and waits. By the weekend the puffiness has crept to the cheeks, then the tummy and ankles. For a small number of young children, that pattern is the first sign of nephrotic syndrome, a kidney condition that sounds frightening but, in its common childhood form, usually responds very well to treatment.
Nephrotic syndrome is a childhood kidney condition where the kidneys leak protein into the urine, causing swelling, most noticeably puffy eyes. The common form responds to steroid treatment in more than 9 in 10 children, with an excellent long-term outlook.
The tell-tale early sign is puffiness around the eyes that’s worse in the morning. If it persists, see a doctor.
What nephrotic syndrome is
Healthy kidneys filter waste from the blood while keeping useful things, like protein, in. In nephrotic syndrome, the filters leak, and protein escapes into the urine. As protein levels in the blood fall, fluid seeps out of the bloodstream into the body’s tissues, and the child swells. Protein in the urine is something doctors watch closely at other life stages too, including in pregnancy, where it can point towards HELLP syndrome in pregnancy.
The most common form in children is called minimal change disease. Its cause is unknown, it’s slightly more common in boys, and it typically appears between the ages of two and six. The reassuring part is that this common form responds well to treatment.
The signs to watch for
- Swelling around the eyes, the earliest and most common sign, usually worse in the morning and sometimes mistaken for allergies
- Swelling that spreads to the face, tummy, legs and ankles as it progresses
- Gradual weight gain from the retained fluid
- Frothy or foamy urine, from the protein in it
- Passing less urine than usual, tiredness and poor appetite
Puffy eyes on their own have plenty of innocent causes. What warrants a doctor’s visit is swelling that persists or spreads, especially alongside any of the other signs.
How it’s diagnosed
Diagnosis is straightforward: a urine test to check for protein, and blood tests to measure the protein (albumin) level in the blood and check how the kidneys are working. In Singapore, a child with suspected nephrotic syndrome is referred to a paediatric kidney specialist, and KK Women’s and Children’s Hospital is the main centre for children’s kidney conditions. A kidney biopsy isn’t usually needed for the typical childhood form; it’s reserved for cases that don’t behave as expected.
Treatment
The mainstay is a course of corticosteroids, usually prednisolone, which stops the protein leaking. More than 90% of children with the common form respond, the swelling settles and the urine clears. Alongside the steroids, the child may need a lower-salt diet while swollen, and sometimes a water tablet (diuretic) to help shift fluid.
The catch is that nephrotic syndrome often relapses: the protein leak returns, sometimes triggered by an infection like a cold. Many children have several relapses over childhood, each treated with another course of steroids, and for children who relapse often, other medicines may be used to reduce the steroid load. The great majority grow out of it by the teenage years, with kidneys that work normally.
Living with it
- Learn to test at home. Parents are often taught to check the urine for protein with dipsticks, so a relapse is caught early. It becomes part of family routine, much as families managing G6PD deficiency learn the G6PD foods and medicines to avoid by heart.
- Watch for relapse after infections, when puffiness often returns, and see the doctor promptly.
- Mind the steroid side effects, such as increased appetite, mood changes and, over long use, effects on growth and bones. The hunger can be startling to parents, though it eases when the course ends, unlike the persistent, hard-to-satisfy appetite seen in conditions such as Prader-Willi syndrome. The team monitors these.
- Keep vaccinations up to date, since infections trigger relapses. Discuss timing with the doctor, as some vaccines are handled differently during steroid treatment.
- Reassure your child. The swelling looks alarming and can affect how they feel about their appearance, but it settles with treatment.
Common questions
What’s nephrotic syndrome in children?
A kidney condition where the kidneys leak protein into the urine, causing swelling, most noticeably around the eyes. The common childhood form, minimal change disease, usually responds very well to treatment.
What are the first signs of nephrotic syndrome?
Puffy, swollen eyes that are worse in the morning are usually the first sign, sometimes mistaken for allergies. Swelling then spreads to the face, tummy and legs, with weight gain and frothy urine.
How is nephrotic syndrome treated?
With a course of corticosteroids such as prednisolone, which stops the protein leak in more than 90% of children with the common form. A low-salt diet and sometimes a diuretic help while the child is swollen.
Will my child outgrow nephrotic syndrome?
Most children with the common form do, by the teenage years, with normal kidney function. It often relapses along the way, and each relapse is treated with another course of steroids.
Is nephrotic syndrome serious?
It needs proper treatment and monitoring, but the common childhood form has an excellent outlook, with the vast majority of children keeping normal kidney function long term.
Where is it treated in Singapore?
By paediatric kidney specialists, with KK Women’s and Children’s Hospital the main centre for children’s kidney conditions. Ask your doctor for a referral.
If the puffiness doesn’t go away
Give morning puffiness a couple of days, and if it’s still there or creeping into the cheeks and ankles, book the appointment instead of waiting it out. A urine dipstick and a blood test can settle the question quickly, and steroids clear the leak in more than 90% of children with the common form. Relapses will probably come, often on the back of a cold, and they’re manageable. Most of these children reach their teens with perfectly healthy kidneys, and the parents who catch it early are usually the ones who trusted a nagging feeling about a swollen little face.
More on children’s health
Medical information is from KK Women’s and Children’s Hospital and the National Kidney Foundation. This is general information, not a diagnosis. See your doctor for any persistent swelling in your child.
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