Parents of kids who are diagnosed with a
chronic kidney disease
have many questions about what might happen next, how their
child might feel, and what treatments are likely to be
involved.
Four major areas of concern are blood pressure, diet,
anemia
(low red blood cell count), and
growth
. Kids may feel sick at times, need to take medicines, and watch
what they eat and drink. Read on to learn about treatments for
kidney disease and what parents can do to help.
Treating Kidney Diseases
Treatment begins with diet modification and medicines. Your
child may need to take several medicines, including vitamins,
calcium, bicarbonate, and blood pressure pills. As a result,
medication management can be a major challenge.
If your child has difficulty remembering to take medications,
consider getting a medicine clock, which has two cardboard clocks -
one for each 12-hour period - with a picture of the medicines
posted on the the times they need to be taken. These clocks can
provide valuable cues for kids who need to take several doses of
different medicines throughout the day and evening. Also, alarm
watches can be set to remind kids to take their medicine.
If your child must take so much medicine that it affects his or
her appetite, contact your doctor for advice. Try to find the
most acceptable forms of medicine (smaller pills, capsules, or more
concentrated liquids, for example) and simplify the medication
schedule under your doctor's guidance.
Newer injectable medicines are available for treatment of anemia
and
growth failure
in some kids with chronic kidney disease. Erythropoetin can
increase the red blood cell count, which often improves energy and
activity levels in kids with kidney failure. Recent studies
have shown that many kids with chronic kidney disease will grow
more normally with the help of human growth hormone injections.
Children with chronic kidney failure may not have any symptoms
until about 80% of their kidney function is lost. Then, they may
feel tired, have nausea or vomiting, have difficulty concentrating,
or experience confusion. Accumulated fluid appears as swelling in
the skin, fluid congestion in the lungs, and
high blood pressure
. At this stage, two treatment options are available - dialysis and
transplant.
Dialysis
Nearly all kids with end-stage kidney disease eventually receive
transplants. If a living related donor can't be found, dialysis
may be required until a donor kidney becomes available.
The two forms of dialysis are
hemodialysis
and
peritoneal dialysis
. In hemodialysis, blood is cleansed outside the body through a
machine. These treatments can take 4 hours at a time and need to be
performed two to three times a week. In general, diet restrictions
are less strict with peritoneal dialysis, and children tend to grow
better. Both types of dialysis, but particularly hemodialysis,
require that diet be limited with regard to fluids, phosphorus, and
salt intake.
Peritoneal dialysis uses the body's own peritoneal membrane
- beneath the outer layers of the abdominal wall - to filter the
blood. It requires fewer dietary and fluid restrictions and offers
more lifestyle flexibility.
Two forms of peritoneal dialysis are available:
- continuous cycling peritoneal dialysis, or CCPD
- continuous ambulatory peritoneal dialysis, or CAPD
CCPD uses a simple machine to perform the dialysis at night;
CAPD is done throughout the day. CCPD requires the assistance of a
parent and is most suitable for younger children; CAPD is performed
by the patient and may be more suitable for older kids and
teens.
Helping Your Child
Needs of kids with chronic kidney disease often
include dietary changes. Ensuring that they get adequate
calories and proper amounts of various nutrients can be a
challenge. Supplementing your child's diet with extra
carbohydrates and fats might help to increase calorie intake.
The kidneys cannot easily remove excess water, salt, or
potassium, so their intake might need to be limited. Dairy products
have to be restricted because they contain large amounts of
phosphorus. Too much phosphorus may lead to calcium deposits in the
eyes, heart, skin, and joints and may leach calcium from bones,
which can increase the risk of
broken bones
.
But eliminating dairy foods can make it difficult for kids
to get enough calcium to maintain bones and support other body
functions, particularly those affecting growth.
In kids with more severe kidney failure, reducing the intake of
dairy products and other protein-rich foods (such as meat, fish, or
eggs) can make the filtering work of the kidneys easier and can
sometimes delay the need for dialysis. While avoiding excessive
protein intake is advisable and will also help limit phosphorus
intake, it's important to remember that kids do need
enough protein for growth - so strict protein restriction (the kind
recommended for adults) should not be used.
You'll also need to monitor fluid intake. If your
child's ability to produce urine is declining, fluid intake
needs to be limited. Stay away from "super-size" drinks,
and offer slushy beverages or ice cubes to suck on.
Some kids with kidney disease, particularly those with high
blood pressure, may need to restrict their intake of sodium, which
is found in table salt and many foods. Be careful of salt
substitutes, too. Many salt substitutes have potassium in them,
which can cause renal failure. Some other salt preparations (for
example, "natural salts," Himalayan salts, etc.) are
just as high in sodium chloride as common table salt.
Read
food labels
and talk to your doctor or a dietitian about the sodium content of
various foods. Consult your nephrologist about an appropriate diet
that meets your child's need for calories and nutrients while
minimizing damage to kidneys and avoiding other complications.
Exercise
will help your child perspire to get rid of excess fluid and flush
out toxins through the skin. Keep TV and video games to a minimum
and encourage physical activity instead. Walking and
strength training
make bones stronger and stimulate muscles and nerves that can help
ease "restless leg syndrome" and other nervous system
problems sometimes associated with kidney disease.
Helping Your Child (more)
Beyond these physical concerns, kids should be encouraged to
express their feelings. Try to find well-adjusted young adults who
had chronic kidney disease during childhood to talk with you and
your child. You may find contacts and support groups through your
nephrologist or the National Kidney Foundation. It's important
for kids to see that the symptoms of the disease can be managed and
controlled and that they can live a full life.
Kids whose health is stable should be encouraged to
participate as fully as possible in school and activities, which
will help them develop their
self-esteem
.
During hemodialysis treatments, doing homework, reading, and
working on art projects are some positive ways to spend the time.
(One pediatric dialysis patient said she appreciated the special
lunches her mother prepared before her treatments, when she could
ease up a little on the protein, sodium, and potassium
restrictions.)
As kids with chronic kidney diseases get older, they can take on
more responsibility for their own care. School-age kids should know
the names of their medicines and how and when they're taken. As
they're making the transition to adulthood, teens can share in
the responsibility of making appointments. Teens should also have
time alone to speak with the doctor and other members of the health
care team.
A big step for kids is being able to talk to others - such as
teachers, coaches, and friends - about their condition. Teens
especially don't want to stand out or seem different. Part of
the process of learning and maturing will be identifying
limitations and knowing when to ask for help.
Kids with chronic kidney disease might also have problems
dealing with the side effects of medicines. For those taking
prednisone for long periods of time, these effects can be
significant, including weight gain (especially around the face and
trunk), moodiness, sleep disturbances, cataracts, and osteoporosis
(weakening of the bones). Long-term treatment with these
medications also can slow growth and delay pubertal maturation.
Long-term prednisone treatment can lead to or aggravate acne in
teens. To an adolescent dealing with body image, a clear complexion
might be just as important as controlling the kidney disease.
Besides the stress of having a
chronic illness
, your child is going through all of the trials and tribulations of
growing up as experienced by all kids. Treat him or her as a child
first, which includes establishing standards of behavior.
Sometimes, those standards have to be relaxed or suspended during
particularly difficult times; the trick is picking them up again
after your child's health improves.
Keep the lines of communication open so everyone knows
what's happening and never hesitate to ask for help from your
doctor or a mental health professional if you think it might be
needed.
Reviewed by:
Laszlo Hopp, MD
Date reviewed: March 2009
Note: All information is for educational purposes only. For specific medical advice,
diagnoses, and treatment, consult your doctor.
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