Nephrotic Syndrome (Child)

The role of the kidney is to remove waste products and extra water from the body. These waste products end up in the urine. Protein is an important part of the blood and is normally not filtered out. So, there is no protein in the urine.

Nephrotic syndrome is a type of kidney disease where there is loss of protein into the urine. Protein in the blood prevents fluid from leaking out the blood vessels into the tissues. When protein is lost from the blood, there may be swelling of the face, arms, legs, and belly (abdomen) as fluids leak into these tissues. This swelling is called edema.

Other symptoms may include loss of appetite, tiredness, abdominal pain, diarrhea, and blood clots. The diagnosis is made with a combination of urine and blood tests. Treatment depends on the type of nephrotic syndrome. There are several different causes of nephrotic syndrome in children and adults. But in most children under age 10, the cause is minimal change disease (also called Nil disease). A kidney biopsy may be needed to know what type of nephrotic syndrome your child has, especially as he or she gets older. This involves taking a tissue sample from the kidney. Steroids and other immunosuppressive medicines are an important part of the treatment for nephrotic syndrome. Long-term steroid use has side effects that your child's doctor will discuss with you. Your child's doctor may give other medicines to help the kidneys remove extra water from the body (diuretics) and lower high blood pressure.

Nephrotic syndrome can get better on its own and with treatment. It may also get worse despite treatment. Also, there may be periods of improvement and relapses. Family and peer support is important for the child’s well-being. 

Home care

The following are general care guidelines:

  • Salt in food affects body swelling. Don't add salt at the table and don't give your child salty foods. Your child's healthcare provider will give you more specific information on how much salt your child can have each day. Water and fluids usually don’t have to be limited unless your child has severe swelling (edema). The rest of the diet may be normal.

  • Unless there is severe edema, encourage normal play and activity. 

  • A viral respiratory illness could cause a relapse, so have your child stay away from those who have colds or other respiratory illness.

  • Once there has been recovery, test urine for protein every day. This will help you to see early signs of a recurrence.

  • The best outcomes occur when parents keep an ongoing log of the child's treatment and progress. This includes swelling, blood pressure, urine protein, and other illnesses.

  • Put off routine vaccines until your child is in remission and off steroids for at least 3 months. Discuss this with your child's healthcare provider.

Follow-up care

Follow up with your child's healthcare provider, or as advised. Contact one of the following for more information:

  • American Association of Kidney Patients,t 800-749-2257, www.aakp.org

  • National Kidney Foundation,t 800-622-9010, www.kidney.org

Call 911

Call 911 if any of the following occur:

  • Severe weakness, dizziness, headache, fainting, drowsiness, or confusion

  • Chest pain or shortness of breath

When to seek medical advice

Call your child's healthcare provider right away if any of these occur:

  • Nausea or vomiting, or abdominal pain

  • Unexpected weight gain or swelling in the legs, ankles, or around the eyes

  • Dark colored urine

  • Decreased or absent urine output

  • Fever (See Fever and children, below)

  • New symptoms or symptoms that get worse

Fever and children

Use a digital thermometer to check your child’s temperature. Don’t use a mercury thermometer. There are different kinds and uses of digital thermometers. They include:

  • Rectal. For children younger than 3 years, a rectal temperature is the most accurate.

  • Forehead (temporal). This works for children age 3 months and older. If a child under 3 months old has signs of illness, this can be used for a first pass. The provider may want to confirm with a rectal temperature.

  • Ear (tympanic). Ear temperatures are accurate after 6 months of age, but not before.

  • Armpit (axillary). This is the least reliable but may be used for a first pass to check a child of any age with signs of illness. The provider may want to confirm with a rectal temperature.

  • Mouth (oral). Don’t use a thermometer in your child’s mouth until he or she is at least 4 years old.

Use the rectal thermometer with care. Follow the product maker’s directions for correct use. Insert it gently. Label it and make sure it’s not used in the mouth. It may pass on germs from the stool. If you don’t feel OK using a rectal thermometer, ask the healthcare provider what type to use instead. When you talk with any healthcare provider about your child’s fever, tell him or her which type you used.

Below are guidelines to know if your young child has a fever. Your child’s healthcare provider may give you different numbers for your child. Follow your provider’s specific instructions.

Fever readings for a baby under 3 months old:

  • First, ask your child’s healthcare provider how you should take the temperature.

  • Rectal or forehead: 100.4°F (38°C) or higher

  • Armpit: 99°F (37.2°C) or higher

Fever readings for a child age 3 months to 36 months (3 years):

  • Rectal, forehead, or ear: 102°F (38.9°C) or higher

  • Armpit: 101°F (38.3°C) or higher

Call the healthcare provider in these cases:

  • Repeated temperature of 104°F (40°C) or higher in a child of any age

  • Fever of 100.4° (38°C) or higher in baby younger than 3 months

  • Fever that lasts more than 24 hours in a child under age 2

  • Fever that lasts for 3 days in a child age 2 or older

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