This handout has been written to help you learn
about nephrotic syndrome and how to take care of
your child at home. If you have any questions,
please be sure to ask your doctor or nurse. We are
here to help you.
What do the kidneys do?
The kidneys are two fist-sized organs found in the
lower back. When they are working well, they
clean the blood, and help the body get rid of waste
products, excess salt, and water. When diseased,
the kidneys may leak red blood cells and protein
into the urine. Blood and protein are usually not
found in the urine of a person whose kidneys are
healthy and working well.
What is nephrotic syndrome?
This is an illness where proteins leak through the
kidney into the urine. These proteins would
normally stay in the blood where they work to keep
fluids from leaking into the nearby body tissues. As
time goes by, if the body is losing protein faster than
the body can keep up with, the blood protein levels
will drop and fluid will leak out of the blood vessels
into the body tissues. This leads to swelling which
is most often seen in the eyelids in the mornings. It
may also be seen in the feet and legs, hands, face,
belly or scrotum. While your child has nephrotic
syndrome, he will not pass urine as often as he
normally does, and the urine will look very
concentrated (dark yellow).
It is often young children between the ages of 18
months and 5 years that develop this illness.
Although a person at any age can get this, it happens
twice as often in boys than in girls. The most
common cause in this age range is Minimal Change
Nephrotic Syndrome (MCNS). Children with
MCNS tend to respond well to treatment and, in the
long run, do very well. There are other kidney
diseases that cause nephrotic syndrome. If your
child does not respond to early treatments, we may
need to look further to make a diagnosis. This can
be a serious chronic disease that will need special
attention over the years, however many children
outgrow this illness over time with no lasting harm
to the kidneys.
What is the treatment?
It is not known what causes nephrotic syndrome or
how long your child may have the illness. It may be
a problem with your child’s immune system. This
problem only affects the kidneys. Therefore, your
child will not be more likely to get infections.
Our goal with treatment is to try to control the
swelling and to stop the leakage of protein in the
The best way for you to try to control your child’s
swelling is to limit the amount of salt he eats and
drinks. Even normal amount of salt will cause the
body to retain fluid. A dietician will work with you
to help plan a low salt diet for your child and
explain how to decrease salt in the diet. This is a
very important part of the treatment. Don’t
decrease the amount of fluid your child drinks.
Swelling is not affected by the amount of fluids he
drinks, but by the amount of salt he eats and drinks
Your child may be given corticosteroids. The most
common form is prednisone. In nephrotic
syndrome, prednisone is given when:
ξ A large amount of protein is present in the
ξ Weight gain
Prednisone is similar to a hormone made by the
body. It is a very strong medicine that has a number
of side effects. Some of these side effects are:
ξ Increased appetite
ξ Acne (pimples) in teens on the face, back
ξ Mood swings
ξ Increased risk of infection
ξ Upset stomach, increased stomach acid
For children who are taking prednisone for a long
time (months), there are more side effects to watch
for such as:
ξ Slowing of the growth rate
ξ Cataracts (all children taking prednisone for
long periods should have their eyes carefully
checked once a year)
ξ Weakening of the bones (osteoporosis)
ξ Hip and knee problems
ξ Severe headaches
ξ High blood pressure
ξ Increased risk of infection
Some children who have this illness are at risk of
forming blood clots during the time they are in
relapse. Your doctor may have your child take a
daily baby aspirin. This will help prevent any clots
from forming. Taking the baby aspirin is only
needed while your child is in relapse. While your
child is taking the aspirin, if she gets a viral illness,
especially chicken pox, you should stop the aspirin.
If your child has not had either chicken pox or the
chicken pox vaccine and she has contact with
someone with chicken pox while she is taking
prednisone, please call your doctor right away. If
your child has severe pain in an arm or leg, uneven
swelling of an arm or leg, or changes in the color or
temperature of an arm or leg, call your doctor right
Children who have this illness are at risk for
peritonitis (infection in the abdomen) and sepsis
(infection in the blood stream) while they are in
relapse (see definition of relapse on next page). We
can lower the risks by giving your child a
vaccination called Pneumovax, and by prescribing
penicillin to be taken twice a day while in relapse.
If your child develops a fever or belly pain while
nephrotic, you should call your doctor right away.
These can be signs of life-threatening illness, and
your child’s condition can get worse quickly.
Sometimes, we will prescribe a diuretic “water pill”
for your child to help control the swelling. These
pills can be hard to use safely in children with
nephrotic syndrome, so we do not use them often.
In order to keep track of the amount of protein in
your child’s urine and her response to treatment, we
will ask you to test her urine at home using urine
dipsticks. We will teach you how to do and record
the results of you how to do and record the results
of this test. Your child’s response to prednisone is
very important in helping the doctor adjust the dose.
We will ask you to record the results on the sheets
we have given you.
A remission is a response to treatment with decrease
in the protein in the urine. A remission is defined as
your child’s urine is trace or negative for protein for
three days in a row.
A relapse is when protein returns to your child’s
urine. It is sometimes hard for you to know when
your child is having a relapse. It is safest to call our
office when your child’s urine protein is greater
than trace to discuss further treatment.
Treatment does not cure this illness. It only treats
the symptoms. Most children (80%) will have a
return of protein in their urine and this is called a
relapse. Relapse can occur:
ξ If your child has an infection
ξ If the prednisone is not taken as prescribed
ξ For unknown reasons
How will you know if your child is having a
1. Weigh your child at least once a month to have
an idea of what his normal weight is. Record
the weight on the attached sheets.
2. Watch for signs of swelling
ξ Sudden weight gain
ξ Swelling around the eyes--most often seen in
ξ Ankle swelling--often seen before bedtime
after the child has been up all day
ξ Swelling in the legs, hands, belly, and
3. Routine monitoring of the urine
Check your child’s urine for protein at least once a
week even when in a long remission. The reason
for monitoring is to “catch” a relapse early before
swelling occurs. If you are not checking the urine
and your child has a relapse, the only way for you to
be aware of this is when he becomes swollen. Once
swelling occurs, it becomes much harder to get rid
of the excess fluid that your child’s body is
retaining. It is much easier to care for your child if
you are aware of the relapse early, and tell us before
the swelling happens. If your child develops a viral
illness, you should check the urine more often since
an infection can trigger a relapse.
What to do when your child has swelling
and protein in the urine?
1. Follow a salt-restricted diet. If you have any
questions or concerns about the diet once you
are home, call 608-263-6420 extension 1 to
schedule an appointment with a pediatric
2. Give medicine as prescribed, and keep track on
the record sheets included at the back of this
3. Weigh your child at the same time each day.
Record the weight on the record sheet.
Continue to weigh your child every day, and
watch for a sudden increase in weight.
4. We suggest that you test the urine for protein
once a day while your child is having symptoms.
It is best to check in the morning. Record the
results of the test on the attached sheet.
5. Protect skin: Swelling not only puts excess
pressure on the skin, but will also make the skin
look shiny and stretched. As a result, the skin is
fragile and can easily break open. To protect the
ξ Avoid constant pressure on swollen
areas. For example: do not sit or lie in
one position for a long time.
ξ Avoid tight clothing, especially tight
elastic around ankles and wrists.
ξ Remove watches, rings, belts, or other
items that could constrict the skin.
ξ For boys, briefs are the preferred
underwear because they give more
support than loose fitting boxer shorts.
6. Watch for swelling, redness and any infections,
such as a cold, ear infection, etc. If your child
has swelling or an infection you may call your
local doctor or call the pediatric specialty clinic
at (608) 263-6420 extension 1.
Does this disease ever go away?
Children who have MCNS may have different
outcomes after their first treatment. About 1/3 will
never have a return of their illness (a relapse).
Another one third will have a relapse of their illness
a few times a year. Sadly, the other 1/3 will have
frequent relapses. They will need prolonged use of
prednisone to keep their illness in remission. This
group of children is the most challenging to care for.
Many children no longer relapse once they enter
Regardless of which pattern your child develops, it
is important to treat your child like a normal child.
Your child needs to have a routine, such as going to
school and seeing friends.
Can my child receive immunizations?
While your child is nephrotic and taking prednisone,
it is best to avoid immunizations. All live vaccines
such as varicella (chickenpox), MMR and oral polio
must be avoided since your child’s immune system
is suppressed by the prednisone. She would be at
risk of getting an infection from the vaccine. Also,
it is best to avoid even killed, inactive vaccines,
since the prednisone would most likely affect your
child’s ability to respond to these vaccines. You
should wait until your child is in remission and off
prednisone for at least 2-4 weeks before she
receives any immunizations.
Your health care team may have given you this information as part of your care. If so, please use it and call if you have any questions.
If this information was not given to you as part of your care, please check with your doctor. This is not medical advice. This is not to be
used for diagnosis or treatment of any medical condition. Because each person’s health needs are different, you should talk wi th your
doctor or others on your health care team when using this information. If you have an emergency, please call 911. Copyright
10/2017 University of Wisconsin Hospitals and Clinics Authority. All rights reserved Produced by the Department of Nursing.