Caring for a Child with Kidney Disease

Caring for a Child with Kidney Disease

Here's an excerpt from a helpful article for parents of children with Chronic Kidney Disease (CKD) from the National Institute of Diabetes and Digestive and Kidney Diseases:…

"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.

More information about kidney disease in children and its treatment is provided in the NIDDK health topics, Overview of Kidney Disease in Children and Treatment Methods for Kidney Failure in Children.
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 School

School 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

vocational rehabilitation
special accommodations

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-esteem

Having 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:

Children can learn more about their medications, including doses.
Children on dialysis should be encouraged to take an active part in their treatments.
Parents or guardians should allow children to participate in treatment decision making.

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.

More information is provided in the NIDDK health topic, Urinary Incontinence in Children.
Making Friends

Children 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."