The vast majority of children with nephrotic syndrome will outgrow it by the time they reach young adulthood. In the rare case when a child needs a kidney transplant, we have a protocol that decreases the chance that the nephrotic syndrome re-appears in the new organ from 50 percent to 20 to 30 percent.
Michael J. Somers, MD, director of clinical services in Nephrology, Boston Children's Hospital
Nephrotic syndrome (NS) is the name given to a collection of kidney-related findings in your child’s body. These include:
- proteinuria—high levels of protein in the urine (based on your child’s age and size)
- hypoalbuminemia—low levels of protein in your child’s blood, since it’s being passed out of his body in his urine
- edema—swelling. This happens because the proteins in your child’s blood act as a sponge to keep fluid in the blood. With fewer proteins to do this, the fluid may leak out of the blood into your child’s tissues, causing them to swell, especially around the stomach area.
- high cholesterol (blood fat) levels—low levels of protein in the blood stimulate the body to overproduce certain kinds of blood fats
While nephrotic syndrome is not a disease, it can be the first sign of disease that can damage the kidney's tiny blood-filtering unit (glomeruli) where urine is made.
Here’s what you need to know about nephrotic syndrome:
- In the vast majority of children, NS is idiopathic, meaning that doctors don’t yet know what causes it.
- Nephrotic syndrome always affects both kidneys.
- It usually appears between the toddler and elementary school years, although it may appear later.
- There are thought to be two forms of nephrotic syndrome, minimal change disease (MCD) and focal sclerosis (FSGS).
- MCD is much more common in children, and likely to respond to therapy.
- FSGS is a more aggressive disease, and may lead to kidney damage.
- Most children with NS outgrow it by young adulthood.
How Children’s Hospital Boston approaches nephrotic syndrome
With about 3,200 patient visits annually, the General Renal Program at Children's evaluates and treats children with nephrotic syndrome and acute kidney injury or chronic kidney disease as well as fluid, electrolyte or metabolic abnormalities. We are part of the Division of Nephrology, the largest pediatric nephrology service in the United States.
Our division includes a pediatric dialysis unit with special expertise in:
- acute and chronic hemodialysis
- peritoneal dialysis
- continuous renal replacement therapy
In addition to providing expert care today, we’re searching for ways to improve the lives of children with nephrotic syndrometomorrow by conducting research to better understand the disease and find new treatments.
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Reviewed by Michael J. Somers, MD
© Children’s Hospital Boston; 2011