General Information on Kidney Disease

Once your child has been diagnosed with a chronic kidney disease, it may help to know what could happen next - how your child might feel and what treatments might be involved. Four major areas of concern for parents of kids with kidney diseases are the child's blood pressure, diet, anemia (low blood count), and growth. Your child may frequently feel sick and may need to take medicines and be careful about what he or she eats and drinks. For you, that can mean a greater need for involvement in your child's life. Keep reading to learn about treatment for your child's kidney disease and what you 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 may be a major challenge.

If your child has difficulty remembering to take his or her medicine, you might want to get a medicine clock, which is made up of two cardboard clocks - one for each 12-hour period - with a picture of the medicines on the faces of the clocks at the times the medications need to be taken. These clocks can provide a valuable cue for a child who needs to take several doses of different medicines throughout the day and evening. Also, alarm watches can be set to remind your child to take his or her medicine.

If your child needs to take so much medicine that he or she feels full and doesn't want to eat as much, ask your child's doctor for suggestions. Try to find the most acceptable forms of medicine (smaller pills, capsules, or more concentrated liquids, for example) and simplify your child's medication schedule under the doctor's guidance as much as possible.

Newer injectable medicines are available for treatment of anemia and growth failure in some children with chronic kidney disease. Erythropoetin can increase the red blood cell count, which often improves the energy and activity levels of a child with kidney failure. Recent studies have shown that many children 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.

Nearly all children 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 is found.

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. Hemodialysis requires that a child's 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: one uses a simple machine to perform the dialysis at night (CCPD), whereas the other is done throughout the day (CAPD). 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 an older child.

Helping Your Child

A child with chronic kidney disease may have several needs to address, including diet changes. Ensuring that your child takes in adequate calories and proper amounts of various nutrients can be a challenge for both you and your child. Supplementing your child's diet with extra carbohydrates and fats may help to increase calorie intake.

As kidney failure develops, it produces a taste in the mouth that leads to an aversion to certain foods, especially proteins. Dairy products have to be restricted because they contain large amounts of phosphorus. But if they're eliminated, it can be difficult to provide enough calcium in your child's diet to maintain bones and support other body needs, particularly in a growing child.

In children with more severe degrees of 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 put off the need for dialysis. It's important to remember that children do need enough protein for growth, and strict protein restriction (the kind that's recommended for adults) should not be used. Avoiding excessive protein intake is advisable, though, and will also help limit phosphorus intake. Too much phosphorus may lead to calcium deposits in the eyes, heart, skin, and joints and may weaken the skeleton, which can increase the risk of broken bones.

Many foods (including fruits and vegetables) contain potassium, but too much of it can be dangerous for children with kidney failure. Foods that are high in potassium include orange juice, bananas, tomato sauces, raisins, and melons.

You'll also need to monitor your child's intake of fluids. If his or her ability to produce urine is declining, fluid intake needs to be limited. Stay away from "super-size" drinks, and offer your child slushy beverages or ice cubes to suck on.

Some children with kidney disease, particularly those with high blood pressure, may need to restrict their intake of sodium, which is found in table salt and foods. The advice of your child's doctor or a dietitian may be valuable in helping you and your child learn about the sodium content of various foods.

Talk to your child's 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. Beyond these physical concerns, allow your child to express his or her feelings. Try to find well-adjusted young adults who had chroni kidney disease during childhood to talk with you and your child. You may find contacts and support groups through your child's nephrologist or your local chapter of the National Kidney Foundation. It's important for your child to see that the symptoms of the disease can be managed and controlled and that he or she can live a full life.

If your child's health is stable, encourage him or her to participate as fully as possible in school and activities. This will help your child develop 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 children 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 with kidney disease should also have time alone to speak with the doctor and other members of the health care team.

A big step for children is being able to talk to others - such as teachers, coaches, and friends - about their illness. Teens especially don't want to stand out or seem different because they're sick. Part of the process of learning and maturing will be identifying limitations and knowing when to ask for help.

Kids with chronic kidney disease may also have difficulties dealing with the side effects of medicines they must take. For children 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 can also slow a child's growth and delay pubertal maturation.

Long-term prednisone treatment may also lead to or flare up acne in a teen. To an adolescent dealing with body image, clearing his or her complexion may be just as important as controlling the kidney disease.

This brings up the obvious - 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 children. 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 child's doctor or mental health professional if you think it might be needed.

Reviewed by: Laszlo Hopp, MD