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 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:
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Loss of appetite
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Tiredness
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Abdominal pain
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Diarrhea
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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 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 healthcare provider will discuss with you. Your child's provider 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.
Home care
Here are general care guidelines:
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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.
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Unless there is severe edema, encourage normal play and activity.
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A viral respiratory illness could cause a relapse, so have your child stay away from those who have colds or other respiratory illness.
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Once there has been recovery, test urine for protein every day. This will help you to see early signs of a recurrence.
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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.
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Put off routine vaccines until your child is in remission and off steroids for at least 3 months. Discuss this with your child's provider.
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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 care
Follow up with your child's healthcare provider, or as advised. Contact one of these groups for more information:
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American Association of Kidney Patients at www.aakp.org or 800-749-2257
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National Kidney Foundation at www.kidney.org or 800-622-9010
Call 911
Call
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Severe weakness, dizziness, headache, fainting, drowsiness, or confusion
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Chest pain or shortness of breath
When to get medical care
Call your child's healthcare provider if any of these occur:
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Nausea, vomiting, or abdominal pain
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Unexpected weight gain or swelling in the legs, ankles, or around the eyes
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Dark-colored urine
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Peeing very little or not at all
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Extreme tiredness (fatigue) or confusion
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Fever (see "Fever and children" below)
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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:
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Rectal. For children younger than 3 years, a rectal temperature is the most accurate.
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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.
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Ear (tympanic). Ear temperatures are accurate after 6 months of age, but not before.
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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.
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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 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 them which type you used.
Below is when to call the healthcare provider if your child has a fever. Your child’s healthcare provider may give you different numbers. Follow their instructions.
When to call a healthcare provider about your child’s fever
For a baby under 3 months old:
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First, ask your child’s healthcare provider how you should take the temperature.
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Rectal or forehead: 100.4°F (38°C) or higher
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Armpit: 99°F (37.2°C) or higher
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A fever of ___________as advised by the provider
For a child age 3 months to 36 months (3 years):
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Rectal or forehead: 102°F (38.9°C) or higher
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Ear (only for use over age 6 months): 102°F (38.9°C) or higher
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A fever of ___________ as advised by the provider
In these cases:
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Armpit temperature of 103°F (39.4°C) or higher in a child of any age
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Temperature of 104°F (40°C) or higher in a child of any age
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A fever of ___________ as advised by the provider
