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How can chronic kidney disease (CKD) affect children and their families?The lives of children with serious and long-lasting conditions such as CKD are affected in many ways. CKD is any condition that causes reduced kidney function over an extended period of time. Children with CKD may have a negative self-image and may have relationship problems with family members due to the stress of living with a chronic disease. The condition can lead to behavior problems and make participating in school and extracurricular activities more difficult. CKD can cause learning problems because the buildup of wastes in the body can slow down nerve and brain function. Children with CKD may have trouble concentrating and may develop language and motor skills more slowly than their peers. The most severe problems occur when CKD is present starting early in infancy. CKD that leads to kidney failure—described as end-stage kidney disease or ESRD when treated with a kidney transplant or blood-filtering treatments called dialysis—can increase these challenges. Fortunately, a kidney transplant can reverse or improve most of these problems. Dialysis can also improve or correct these problems. Most children with CKD who receive appropriate treatment can attend school, graduate from high school, and go on to college or vocational school. However, families of children with CKD or kidney failure need to recognize that these children may need additional guidance and understanding. How can parents and other adults help children with chronic kidney disease in daily life?Parents and other adults can help children with CKD fit in at school, deal with low self-esteem, make friends, be physically active, and follow their treatment regimen. As children with CKD approach adulthood, they may need help with preparing to enter the workforce. Attending SchoolSchool attendance is vital in helping children with CKD lead the best life possible. Many people are unaware of how CKD affects children. School administrators, teachers, and classmates should receive education and information about the effects of CKD. Children with kidney failure may miss school each week because of dialysis and medical appointments. These absences can compound the learning problems many children with CKD face. Parents or guardians should make every effort to schedule treatments outside of school hours. The Individuals with Disabilities Education Act Public Law 94-142 states that every child is entitled to an appropriate education and directs school districts to provide special services to ensure children with disabilities can participate in regular classrooms to the fullest extent possible. Children with CKD may need
To receive special education services, children must be evaluated to see if they have a disability and must receive an Individualized Education Program—a written document that details the services each child will receive. Parents or guardians of children with CKD should talk with the school counselor about having their child evaluated. Dealing with Low Self-esteemHaving a chronic illness can make a child feel depressed and powerless. Learning and growth problems may also contribute to low self-esteem. One way to help children feel empowered is to give them as much control and responsibility over their own care as possible:
Urinary incontinence—the loss of bladder control, which results in the accidental loss of urine—is common in children with CKD. Urinary incontinence can be embarrassing for children and can make it harder to build relationships with their peers. However, several strategies and treatment options are available to help prevent urinary incontinence. Making FriendsChildren with CKD may have trouble fitting in with children their own age because of their small stature or delayed mental development. For children who have had a transplant, the side effects—such as a full face, weight gain, acne, or facial hair—of some of the medications they take may make it harder to make friends and may also lower self-esteem. Participating in regular classroom and extracurricular activities may help children improve their social skills. Summer camps and recreational programs for children with special needs can be a good place to make new friends. Participating in Physical Activities and SportsChildren with CKD should be encouraged to participate in physical activities, including exercise and sports. In general, exercise has physical and psychological benefits. Parents or guardians may feel protective of children with CKD; however, they should not try to limit activities unless instructed to by a health care provider. Some children may even need to be encouraged to get outside and play. Parents or guardians should talk with their child’s health care provider about the right activity level and appropriate sports for their child. Children who have had a kidney transplant can compete in sports. Every year the Transplant Games, sponsored by the National Kidney Foundation, allow people with transplants to participate in friendly competition and show the world that transplantation provides a new lease on life and health. Following Treatment RegimensChildren with CKD may need to take multiple medications, eat a specific diet, and follow their health care provider’s orders to help control their disease. Many children have a hard time following the treatment regimen. Health care providers use the term nonadherence to describe the failure or refusal to take prescribed medications or follow a health care provider’s directions. Adherence can be improved with a combination of health education, motivational techniques, and behavioral skill methods. Strategies need to be tailored to each child and the child’s family. The health care provider should
Preparing to Enter the Work ForceYoung adults who have been treated for CKD during childhood have to overcome a number of barriers to prepare for a career and find a job. Completing the training required for employment takes more effort, and some people with CKD report that their small stature creates problems fitting into adult environments. Employers may have trouble understanding kidney problems and the accommodations that need to be made for people with CKD. The U.S. Department of Labor’s Office of Disability Employment Policy offers a variety of resources for employers and job seekers 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?Many skilled professionals are available to ensure that children with CKD get the best possible care. The family may want to talk with a social worker, mental health professional, financial counselor, and dietitian. If a child reaches kidney failure, the medical staff at the dialysis center or transplantation clinic can provide help. Social WorkerA social worker can help families locate services such as transportation and family counseling. The social worker can provide information about
The social worker can also help families submit applications for Medicare and Medicaid. Medicare is a program that helps people older than 65 and people with disabilities, including people of any age with kidney failure, pay for medical care. Medicaid is a health care program for certain low-income individuals and families who fit into an eligibility group that is recognized by federal and state law. Mental Health ProfessionalA mental health professional, such as a psychologist, can help children with CKD find ways to deal with the emotional turmoil caused by having a chronic illness. Some child psychologists also specialize in helping children with disabilities and medical problems rejoin school activities. They may also be able to suggest techniques that reinforce adherence with taking medication and following the health care provider’s instructions. Family members may also find that counseling helps them handle the conflicts and stresses they face. Many couples report increased tension in their marriage when their child has a serious illness such as CKD. Siblings may resent the amount of attention given to their sibling with CKD and feel guilty about having bad thoughts about their sibling. Financial CounselorA financial counselor can help families meet the financial obligations that chronic illness creates. Medical bills can strain family finances; in some cases, a parent or guardian may need to stop working to care for a child full time. DietitianProper nutrition is extremely important for children with CKD. Every dialysis clinic has a dietitian to help people understand how the food they eat affects their health. The dietitian
Eating, Diet, and NutritionFor children with CKD, learning about nutrition is vital because their diet can affect how well their kidneys work. Parents or guardians should always consult with their child’s health care team before making any dietary changes. Staying healthy with CKD requires paying close attention to the following elements of a diet:
Following the restrictions of a kidney disease diet might be hard at first; however, making tasty and satisfying meals is possible with just a little creativity. More information is provided in the NIDDK health topics, Nutrition for Chronic Kidney Disease in Children and Kidney Failure: Eat Right to Feel Right on Hemodialysis. ResourcesAmerican Society of Transplantation National Kidney Foundation Employers’ Guide Nemours KidsHealth Website What’s the Deal with Dialysis? Nephkids United Network for Organ Sharing U.S. Department of Health and Human Services, Centers for Medicare & Medicaid Services U.S. Social Security Administration Clinical TrialsThe National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) and other components of the National Institutes of Health (NIH) conduct and support research into many diseases and conditions. What are clinical trials and what role do children play in research?Clinical trials are research studies involving people of all ages. Clinical trials look at new ways to prevent, detect, or treat disease. Researchers also use clinical trials to look at other aspects of care, such as improving quality of life. Research involving children helps scientists
Find out more about clinical trials and children. What clinical trials are open?Clinical trials that are currently open and are recruiting can be viewed at www.ClinicalTrials.gov. |