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Being a parent can be 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 kidney disease. You’ll be asked to make life-changing choices about your child’s health and development. Going for dialysis treatments and medical visits can be challenging, but you can still raise a child with chronic kidney disease (CKD) to be as happy, fulfilled and healthy as possible.
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.
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.
Talk to your child’s healthcare 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.
You will be asked to make many decisions based on information provided by your child’s doctor and healthcare team. Good decision-making can be easier to do when you feel you have enough of the facts. Ask the healthcare team for books, magazines and pamphlets, surf the web and visit the library. 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 healthcare team.
There are many areas to consider regarding your child’s care.
Your child's diet
The dietitian can explain which foods your child can eat as well as what to avoid. The dietitian provides you with information about potassium, phosphorus, sodium, fluid limits, protein intake and other aspects of your child’s diet that need to be controlled when on dialysis.
Your child's medications
Your child’s doctor will prescribe medications. Some of them you will give your child at home.
Always consult with your nephrologist before giving your child any over-the-counter medications, including cold remedies or laxatives, as some could be harmful.
Ask your doctor if it is okay for your child to play and exercise, or if there are limits to your child’s activity.
Hemodialysis can be done in a center, three times per week, or at home with the help of a care partner, likely a parent. Whether your child does hemodialysis at a center or home hemodialysis (HHD), he or she will receive the same care from the healthcare team.
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 flexible way of 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.
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.
Sometimes children with CKD do not grow at the same pace as other children their age. 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 is possible when they have CKD. Like any child, he or she wants to feel love and security. Encourage your child to do things that are fun, such as participating in hobbies and interests to keep your child active. Emphasize what the child can do instead of focusing on limitations. 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 healthcare. You’ll be comforted knowing your child will be able to make good decisions as an adult.
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. 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.
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.
Talking about athletes and actors who have 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 will help put the focus on their similarities rather than differences.
Remember, you are not alone. Reaching out to others, such as your healthcare team and people who are going through the same thing, may provide the support you need. You can find people similar to what you're going through on myDaVita.com.
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