Newly Diagnosed? Learn About Nephrotic Syndrome in Children Nephrotic Syndrome is not a disease itself, but an umbrella term for the collection of symptoms that occur when the kidneys’ filters (called glomeruli) become injured and cause protein, and sometimes blood, to “leak” out of the bloodstream and into the urine. The term Nephrotic Syndrome covers a wide range of protein-spilling kidney diseases, such as: C1Q Nephropathy Congenital Nephrotic Syndrome C3 Glomerulopathy Focal Segmental Glomerulosclerosis (FSGS) IgA Nephropathy IgM Nephropathy Membranoproliferative Glomerulonephritis (MPGN) Membranous Nephropathy Minimal Change Disease (MCD) Other rare glomerular kidney diseases Nephrotic Syndrome can happen without a known cause, be genetic, or have environmental causes. Children with Nephrotic Syndrome have an 85% chance of outgrowing their condition. However, some diseases that cause Nephrotic Syndrome in children are chronic, and if the protein-spilling is not controlled, it can lead to permanent and irreversible kidney damage and ultimately, kidney failure. Symptoms of Nephrotic Syndrome in children may include: Swelling of the eyes, extremities, and abdomen (edema) High levels of protein in the urine (proteinuria) Sometimes, blood in the urine (hematuria) Low levels of albumin (protein) in the blood High blood pressure (hypertension) High cholesterol Active protein-spilling leads to kidney damage. The priority for every patient should be to stop or reduce protein in their urine. Most pediatric patients are prescribed Prednisone (a corticosteroid) for an initial 6-8 weeks upon diagnosis. Many patients will respond and will see a reduction in Nephrotic Syndrome symptoms within 4-8 weeks. If the patient does not respond to steroids, the doctor may recommend a biopsy to understand more specifically what is causing the protein-spilling. After a biopsy, a patient can usually be diagnosed more specifically, based on what is seen under the microscope. The most common cause of primary Nephrotic Syndrome in children is a condition called Minimal Change Disease (MCD) — almost 85% of children with Nephrotic Syndrome symptoms have MCD. Because of this, the term “Nephrotic Syndrome” is often used interchangeably with MCD in pediatric care. MCD usually does not cause permanent damage to the filters of the kidneys and the prognosis is generally good. Most patients, however, do experience relapses of protein in the urine. If the proteinuria is not controlled, MCD patients can develop FSGS. If your child has been diagnosed with Nephrotic Syndrome, FSGS, IgA Nephropathy, or a different protein-spilling kidney disease, NephCure is here for you. Follow these steps to get help and information. 01 Sign up with NephCure Once you register with us, you’ll receive information about your child’s diagnosis and potential treatment options. We’ll also contact you to see if you’d like to be connected to a peer support advocate who can help you navigate the disease journey. 02 Watch “Nephrotic Syndrome 101” Our short video on the basics of Nephrotic Syndrome will help you better understand what to expect with this diagnosis. 03 Find a Specialist Nephrotic Syndrome is a rare disease, so finding a kidney specialist (called a nephrologist) is important to obtaining the best care possible and reducing your child’s potential for kidney damage. Ready to learn more? You can find information about raising a child with Nephrotic Syndrome here, learn about your child’s treatment options, or join an upcoming online support group.