Pediatric

When your child has chronic kidney disease

Being a parent is a tough job. Once your child becomes ill, the job becomes even more demanding. In addition to loving and caring for your child, you become a decision maker for treating their disease. You’ll be asked to make life-changing choices about your child’s health and development. Going for dialysis treatments and medical visits will take up time in your already busy schedule. It can be challenging, but you can still raise a child with chronic kidney disease to be as happy, fulfilled and healthy as possible.

Dealing with your feelings

First, you’ll want to deal with your own feelings. Chronic kidney disease (CKD) and dialysis affect the entire family, not just the person who has the disease. Common feelings for parents and siblings are feeling bad for the loved one who is sick and feeling guilty for being healthy. Family members may also feel mad that the ill child takes up too much time and other resources. There are additional feelings of fear, including worrying whether or not the child with chronic kidney disease will be okay physically and emotionally.

If you are scared, if you are sad or angry, your child with CKD may sense these feelings. Chances are, your child may have some of those feelings as well. You don’t necessarily want to share all of your concerns and worries with your child, but don’t deny how you feel either. It’s okay that your child understands the disease affects you and the rest of the family too.

Encouraging open communication will help all family members better understand their feelings. Talk to your child’s health care team, especially the doctor and social worker and ask them for advice. You may also want to meet other parents or siblings who are going through similar experiences. Having a positive attitude and taking a hopeful approach will encourage your child with CKD as well as your other family members.

Learn about your child’s condition

Learn all you can about your child’s disease and treatment. You will be asked to make many decisions based on information provided by your child’s doctor and health care team. Good decision-making is usually not simple, but it’s easier to do when you feel you have enough of the facts. Knowledge also helps you feel less intimidated when talking to medical professionals. You’ll be able to ask better questions. Get all the information you can. Ask the health care team for books, magazines and pamphlets, surf the web and visit the library. Learning from many sources will give you a better understanding of chronic kidney disease and its treatment. Write down questions, as you think of them and take them to your appointment or treatment, so you can remember to review them with the doctor and health care team.

There are many areas to consider regarding your child’s care.

What can your child eat?
The dietitian can explain which foods your child can eat as well as what to avoid. The dietitian provides you with information about potassium, phosphorous, sodium, fluid limits, protein intake and other aspects of your child’s diet that need to be controlled when on dialysis.

What medications will your child have to take?
Your child’s doctor will prescribe medications. Some of them you will give your child at home. A nurse may give other medications during the hemodialysis treatment.

Always consult with your nephrologist before giving your child any over-the-counter medications, including cold remedies or laxatives, as some could be harmful.

Can your child exercise like other children?
Ask your doctor if it is okay for your child to play and exercise, or if there are limits to your child’s activity.

What about treatments?
There are three treatment options for chronic kidney disease: hemodialysis, peritoneal dialysis and a kidney transplant.

Hemodialysis is usually done three times per week at a dialysis center. While your child is getting hemodialysis, ask the health care team to explain the treatment and care. The patient care technician (PCT) at the dialysis center can tell you about the dialysis machine, your nurse can explain how the treatment is working. The dietitian will explain what the lab results mean and how diet can affect the lab work. The social worker will help with any issues regarding insurance or coping with the illness.

Peritoneal dialysis (PD) can be done at home or school, if the child is able. There are two types of PD: continuous ambulatory peritoneal dialysis (CAPD) is done by manually draining and filling the peritoneal cavity in the abdomen, while continuous cycling peritoneal dialysis (CCPD) is performed with a machine at night while the child is sleeping. Your doctor and PD nurse will answer questions you have about the treatment.

Kidney transplant is an option that provides a more “normal” life because the child will not need to spend time on dialysis. A kidney can come from a living donor—usually a family member—or someone who has recently died, but it must be a match to your child’s body to prevent being rejected. Immunosuppressant medication will be prescribed so that the new kidney is not rejected.

Talk to your child’s doctor about the treatment options to help make the best decision for your child and your family.

Who can I talk to about lifestyle issues?
The social worker can help answer questions about coping, depression, insurance, visiting another dialysis center when your family goes on a vacation and other lifestyle issues.

Your child’s physical and emotional growth

Sometimes children with chronic kidney disease do not grow at the same pace as other children their age. In addition to removing waste and fluids from the body in the form of urine, the kidneys help regulate vitamin D, calcium and phosphorous, which help build strong bones. When kidneys are damaged and bones do not get the nutrients they need, they can’t grow. Your doctor may recommend changes in the diet and dietary supplements to help your child grow and develop. If your child is very small compared to other children of the same age, your doctor may prescribe human growth hormone. Talk to your doctor about any concerns you have regarding your child’s growth.

Helping your child lead a happy and fulfilling life can be a challenge when dealing with a chronic disease. Like any child, one with a chronic disease wants to feel love and security. Encourage your child to do things that are fun. Develop hobbies and interests to keep your child active. Emphasize what the child can do instead of focusing on limitations. A sense of humor can help make things seem better, so remember to find things to smile and laugh about. Self-esteem can be the greatest gift you give your child. Allow your child to be active in making decisions about their care. This will give them some power over the disease and changes in their lifestyle. Make sure to teach your child how to make wise choices regarding health issues. Answer questions honestly and encourage your child to be an advocate for better health care. You’ll be comforted knowing your child will be able to make good decisions as an adult.

Talking to your child about his/her CKD

Depending on your child’s age, you will want to be able to explain their disease and treatment, as well as provide help in dealing with their feelings. It is always best to be honest, taking into consideration how much your child is able to understand. By always being truthful, your child will know you can be trusted. Knowledge is power for you and your child. Encourage your child to ask questions. When children receive correct information in an open and positive manner, they will be able to cope more effectively.

Prepare your child for what will be happening when going for a doctor visit, to dialysis or for a medical procedure. Distract your child from pain, unpleasant procedures or long waits with age-appropriate activities including toys, games, books and other items. Take along a favorite stuffed animal, blanket, pillow or anything that will bring comfort.

As your child gets older, remember to talk at their current age level.

Talking about athletes and actors who have chronic kidney disease, a kidney transplant or other illnesses may provide your child with role models to look up to. Children, especially teens, focus on how they are “different” from others. Providing children with role models, as well as encouraging them to talk with others, who have kidney disease, will help put the focus on their similarities rather than differences.

Try to give your child some control over their care. Ask your child to make choices when possible. Often people with a chronic disease feel a loss of control over their life, children are no exception. By letting your child have some decision-making power, perhaps it will be a little easier to accept the things that cannot be controlled.

Although it’s hard to understand why any child should become seriously ill, by facing the reality of chronic kidney disease you will be able to help your child lead a better life. Your child’s doctor, nurse, technician, dietitian and social worker can answer many of your questions. Learn all you can. This will help you make informed decisions about your child’s care. Remember, you are not alone. Reaching out to others may provide the support you need.

If you would like to see a doctor who specializes in the care of kidneys, called a nephrologist, you can use DaVita's Find a kidney doctor tool to locate a nephrologist in your area.