When Your Child Has a Chronic Kidney Disease

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 dietary changes and medicines. Your child may need to take several medicines, including vitamins, calcium, bicarbonate, and blood pressure pills. So, medication management can be a major challenge.

If your child has trouble remembering to take medicines, 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, alarms 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, call 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 schedule under your doctor's guidance.

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. 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 feel confused. Fluid build-up 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:

1. In hemodialysis, blood is cleansed outside the body through a machine. These treatments take several hours at a time and usually need to be done three or more times a week. In most cases, hemodialysis is done in a dialysis center, but in some cases it can be done at home.
2. Peritoneal dialysis uses the body's own peritoneal membrane — beneath the outer layers of the abdominal wall — to filter the blood. Two forms of peritoneal dialysis are available: continuous cycling peritoneal dialysis (CCPD) and continuous ambulatory peritoneal dialysis (CAPD). CCPD uses a simple machine called a cycler to perform the dialysis at night; CAPD is done throughout the day and no machine is needed. 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.

Both types of dialysis, but particularly hemodialysis, require dietary limits with regard to fluids, phosphorus, and salt. With fewer dietary and fluid restrictions, peritoneal dialysis can mean more lifestyle flexibility, and children tend to grow better.

Helping Your Child

Kids with chronic kidney disease often need dietary changes. Making sure that they get enough calories and 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 lots 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 hard 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. But it's important to remember that kids do need enough protein for growth — so strict protein restriction (the kind recommended for adult patients) 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.

Sodium

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 have potassium in them, which can cause problems for kids with kidney 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

Exercise will help your child sweat, which will 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.

Emotions

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. 

Looking Ahead

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 medicines also can slow growth and delay pubertal maturation.

Long-term prednisone treatment can cause acne (or make it worse) 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 the trials of growing up, just like other kids. Treat him or her as a child first, which includes setting rules about behavior. Sometimes, those standards can be relaxed 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.