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 normally no protein in the urine.

Nephrotic syndrome is a kidney disorder where there is loss of protein into the urine. Protein in the blood prevents fluid from leaking out of 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 (belly) pain.
• Diarrhea.
• 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 younger than 10 years, 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 they get older. This means 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 even with treatment. There may also be times of improvement and relapses. Family and peer support is important for the child's well-being.

Here 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 doctor 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.
• After recovery from nephrotic syndrome, test your child's urine for protein every day. This will help you 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 doctor.
• Ongoing home care can become stressful for all family members. Get online or professional support if you or other family members need help.

Follow up with your child's doctor, or as advised. Contact one of these groups for more information:

• American Association of Kidney Patients at www.aakp.org or 800-749-2257
• National Kidney Foundation at www.kidney.org or 800-622-9010

Call 911 right away if your child has:

• Severe weakness, dizziness, headache, fainting, drowsiness, or confusion.
• Chest pain or shortness of breath.

Contact your child's doctor if your child:

• Has nausea, vomiting, or abdominal pain.
• Has unexpected weight gain or swelling in the legs, ankles, or around the eyes.
• Has dark-colored urine.
• Is urinating very little or not at all.
• Has extreme tiredness (fatigue) or confusion.
• Has a fever (see "Fever and children" below).
• Has new symptoms, or symptoms that are getting worse.

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 ages 3 months and older. If a child younger than 3 months has signs of illness, this thermometer can be used for a first pass. The doctor 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 who has signs of illness. The doctor may want to confirm with a rectal temperature.
• Mouth (oral). Don't use a thermometer in your child's mouth until they are at least 4 years old.

Use a 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 okay using a rectal thermometer, ask the doctor what type to use instead. When you talk with any doctor about your child's fever, tell them which type you used.

Below is when to contact the doctor if your child has a fever. Your child's doctor may give you different numbers. Follow their instructions.

When to contact a doctor about your child's fever

For a baby younger than 3 months:

• First, ask your child's doctor how you should take the temperature.
• Rectal or forehead: 100.4°F (38°C) or higher
• Armpit: 99°F (37.2°C) or higher
• A fever of ___________ as advised by the provider

For a child age 3 months to 36 months (3 years):

• Rectal or forehead: 102°F (38.9°C) or higher
• Ear (only for use over age 6 months): 102°F (38.9°C) or higher
• A fever of ___________ as advised by the doctor

In these cases:

• Armpit temperature of 103°F (39.4°C) or higher in a child of any age
• Temperature of 104°F (40°C) or higher in a child of any age
• A fever of ___________ as advised by the doctor