Helping Your Child Adapt to Life with Chronic Kidney Disease

On this page:

• How can chronic kidney disease affect children’s social, emotional, and developmental growth?
• How can you help your child adapt to life with chronic kidney disease?
• Who can help families deal with issues related to chronic kidney disease in children?
• How can eating, diet, and nutrition affect children with chronic kidney disease?
• Clinical Trials for Kidney Disease in Children

How can chronic kidney disease affect children’s social, emotional, and developmental growth?

Chronic kidney disease (CKD) can affect your child’s life in many ways. Children with CKD may struggle with

• developing physical and communication skills
• learning
• focusing
• mental health issues, such as anxiety and depression
• low self-esteem or a negative self-image
• relationships
• behavior
• participating in school and extracurricular activities

Children who develop CKD at a younger age and children who have CKD that leads to kidney failure may experience more severe social, emotional, and developmental challenges. However, early treatment can slow the progression of kidney disease and may improve many of these problems.

With treatment and support, your child can stay healthier longer and live a full life—attend school, socialize with friends, participate in sports and other activities, and pursue a career. You are key to giving your child the support, guidance, and understanding needed to manage the challenges of living with CKD. Talk with your child’s health care professional about the many resources and programs available for families of children with CKD.

How can you help your child adapt to life with chronic kidney disease?

You can help your child with CKD by giving your child opportunities to participate in and benefit from school, to build self-esteem, to hang out with friends, and to be physically active. Over time, you can help your child become more responsible for their treatment and prepare to enter the workforce.

Getting the most out of school

Schools play an important role in making sure students with CKD have the support they need to stay healthy, enjoy the same opportunities for learning and having fun as their peers, and have the tools and flexibility to do their best in school.

The Individuals with Disabilities Education Act (IDEA) states that every child has the right to receive an appropriate education. IDEA provides funding for special education and related services for children with disabilities. To receive special education services, children must be evaluated to see if they should receive an Individualized Education Program (IEP). Examples of special education services include

• classes with fewer students per teacher
• visual aids or prompts
• psychological support

In other cases, a 504 plan may be used to help your child receive appropriate accommodations to be successful in the classroom. Examples of 504 accommodations that may apply to children with CKD include

• sufficient time to get from one classroom to the next
• extra time on tests, including standardized tests
• unrestricted access to a bathroom and water

Talk with your child’s school counselor or administrator about how your child can be evaluated for an IEP or be considered for a 504 plan. Some of these supports may extend beyond high school.

You can help your child succeed in school by

• understanding your child’s rights and the school’s responsibilities to provide a fair and good education.
• making sure your child attends class as regularly as possible. Attending class will allow your child to learn the material firsthand and help your child be part of the classroom community.
• advocating for your child with school officials to obtain educational services or tutoring to help your child keep up with classwork.
• scheduling medical appointments and dialysis treatments outside of school hours, when possible, to limit school absences.
• asking your child’s medical team about arranging for teachers to work with your child during dialysis treatment or in the hospital.
• developing a plan with your child’s teachers to get assignments, set flexible deadlines, and make up tests when absences can’t be avoided. This is your child’s right—not a favor. A 504 plan can help with this, when needed.
• sharing information about your child’s condition, limitations, and other needs with school administrators, teachers, and school health staff so they understand your child’s situation and are prepared to help.
  

Dealing with low self-esteem

The stress of living with a chronic illness can make children with CKD feel depressed and powerless. Problems with learning and growth may also contribute to low self-esteem. You can help build your child’s self-esteem by involving your child in their own care as much as possible. Ask your child’s health care professional to help you find counseling for your child and other family members.

Encourage your child to

• learn about kidney disease, why it’s important to take medicines as prescribed, and how treatment can help
• take an active role in treatment, including dialysis, and become increasingly more involved as your child gets older
• share their thoughts on the treatment options and participate in treatment decision-making

Making friends

Give your child opportunities to socialize and make friends. Make sure your child spends time with peers in different settings, such as at school and during extracurricular activities. Ask your child’s health care professional to help you find summer camps and recreation programs that offer specialized care, such as dialysis treatment or medicine supervision. These programs can give your child the chance to make friends with children who understand what it’s like living with similar challenges.

If your child experiences bladder control problems—the accidental loss or leaking of urine—talk with your child’s health care professional about treatments and prevention strategies. Bladder control problems are common in children with CKD and can be upsetting and embarrassing, but they can be managed with proper treatment.

Children with CKD may look and feel different from their peers and may have trouble fitting in. Consider sharing information about CKD with your child’s teachers, classmates, and other peers—if your child is comfortable with you doing so—to help them understand how the condition affects your child.

Participating in physical activities and sports

As a parent or caregiver, you play a big role in helping your child be more active. Regular exercise benefits your child’s physical and psychological well-being. Encourage all children—including those with CKD and kidney failure—to participate in physical activities such as sports and playing outside. Limit your child’s screen time, or the amount of time your child is allowed to sit in front of a TV or other devices, because this can take away from your child’s active playtime. Talk with your child’s health care team about what activity level and sports are right for your child.

Physical activity can improve your child’s physical and psychological well-being.

Following treatment plans

Many children find it difficult to follow complex treatment plans that require them to take multiple medicines, stick to a specific eating plan, and follow other care guidelines. You can help your child by talking with your child’s health care team to establish a plan that is tailored to your child and fits your family’s lifestyle.

Once you have a plan tailored to your child

• Teach your child about how the personal plan was developed. Be sure your child understands why they need to follow the treatment plan.
• Talk with your child about their wishes, beliefs, and feelings. You can help empower your child to take an active role in their care when you better understand your child’s motivations and fears.
• Actively involve your child in their care. Your child may want to set up a calendar or text reminders to help remember to take medicines, pick out a pill box to organize medicines, or download an app to help track physical activity. Involve your child so they feel more in control of the situation and more confident in the management of their own health.

Over time, CKD can get worse and your child’s treatment plan may need to change. Encourage your child to talk with you about how the treatment plan is working and any parts of the plan that may need to be adjusted. Work with your child’s health care team to adjust the treatment plan as needed.

Preparing to enter the workforce

Children with kidney disease face unique challenges—frequent medical appointments, fatigue, and dialysis treatments. These challenges can make it difficult to prepare for a career and find a job. You can help your child achieve their life goals by teaching them to confidently manage their health and by accessing information, services, and support (PDF, 953 KB) designed to help young adults with disabilities successfully transition to the workforce.

Employers may not understand the challenges associated with kidney disease and the accommodations they may need to make for people with CKD. The U.S. Department of Labor’s Office of Disability Employment Policy offers employers and job seekers resources about career planning, workplace accommodations, work incentive programs, and other related issues.

Who can help families deal with issues related to chronic kidney disease in children?

Your child’s health care team includes many skilled professionals who will make sure your child gets the best possible care. In addition to working with a pediatrician and a nephrologist, you may find it helpful to talk with a social worker, a mental health professional, and a registered dietitian. If your child has kidney failure, the dialysis center staff or transplant team will help support your child and family throughout the dialysis treatment or kidney transplant process.

Social worker

A social worker can help reduce the stress of caring for a child with a chronic illness by

• recommending services such as transportation to medical appointments, family counseling, or support groups
• educating children and their families about kidney disease, dialysis, and kidney transplant
• helping to fill out and submit applications for Medicare and Medicaid and helping to find benefits and financial assistance for kidney failure treatment

Mental health professional

A mental health professional, such as a psychologist, can

• find healthy ways for children to cope with the stress of living with a chronic illness
• recommend ways to help your child rejoin school, such as by finding a peer “buddy” to help your child adjust to being back in school and reconnect with classmates
• suggest strategies to ensure your child takes medicines as prescribed and follows the health care team’s instructions
• counsel family members of children with a chronic disease on ways to better handle conflicts and stress

Registered dietitian

A dietitian can

• explain how your child’s health is affected by what your child eats and drinks
• create an eating plan for your child to stay healthy and grow properly
• recommend what types of food and how much food your child needs as your child gets older or your child’s kidney disease gets worse
• explain the possible nutritional deficiencies caused by kidney disease and recommend vitamin and mineral supplements  or formulas to improve your child’s nutrition
• provide recipes and recommend cookbooks appropriate for children with kidney disease that fit your family’s lifestyle and culture

How can eating, diet, and nutrition affect children with chronic kidney disease?

Eating the right foods in the right amounts may help your child feel better, prevent or delay health problems from CKD, and improve your child’s growth. Your child’s health care professional may suggest changes to what your child eats and drinks to help your child stay healthy. If you have trouble providing healthy food for your child, sometimes called “food insecurity,” you are not alone and assistance is often available. Talk with your child’s health care team and ask for advice before making changes to your child’s diet.

Clinical Trials for Kidney Disease in Children

The NIDDK conducts and supports clinical trials in many diseases and conditions, including kidney diseases. The trials look to find new ways to prevent, detect, or treat disease and improve quality of life.

Why are clinical trials with children important?

Children respond to medicines and treatments differently than adults. The way to get the best treatments for children is through research designed specifically for them.

We have already made great strides in improving children’s health outcomes through clinical trials—and other types of clinical studies. Vaccines, treatments for children with cancer, and interventions for premature babies are just a few examples of how this targeted research can help. However, we still have many questions to answer and more children waiting to benefit.

The data gathered from trials and studies involving children help doctors and researchers

• find the best dose of medicines for children
• find treatments for conditions that only affect children
• treat conditions that behave differently in children than in adults
• understand the differences in children as they grow

How do I decide if a clinical trial is right for my child?

We understand you have many questions, want to weigh the pros and cons, and need to learn as much as possible. Deciding to enroll in a study can be life changing for you and for your child. Depending on the outcome of the study, your child may find relief from their condition, see no benefit, or help to improve the health of future generations.

Talk with your child, as well as your child’s pediatrician and pediatric nephrologist, and consider what would be expected. What could be the potential benefit or harm? Would you need to travel? Is my child well enough to participate? While parents or guardians must give their permission, or consent, for their children to join a study, the children must also agree to participate, if they are capable (verbal). In the end, no choice is right or wrong. Your decision is about what is best for your child.

The National Institutes of Health (NIH) is committed to ensuring you get all the information you need to feel comfortable and make informed decisions. The safety of children remains the utmost priority for all NIH research studies. For more resources to help decide if clinical trials are right for your child, visit Clinical Trials and You: For Parents and Children.

What aspects of kidney disease are being studied in children?

Researchers study many aspects of kidney disease in children, such as

• interventions to help adolescents and young adults better manage chronic illnesses by themselves
• kidney disease progression and understanding how it can affect a child’s ability to concentrate, remember things, process information, learn, and understand
• methods that make it easier for children with chronic kidney disease to stick to their treatment plans

Watch a video of NIDDK Director Dr. Griffin P. Rodgers explaining the importance of participating in clinical trials.

What clinical studies for kidney disease are available for child participants?

You can view a filtered list of clinical studies on kidney disease in children that are federally funded, open, and recruiting at www.ClinicalTrials.gov. You can expand or narrow the list to include clinical studies from industry, universities, and individuals; however, the NIH does not review these studies and cannot ensure they are safe. If you find a trial you think may be right for your child, talk with your child’s health care provider about how to enroll.