This is the second in a two-part series. See also Dealing with Kidney Disease in Children (Part 1)
By Judy Taylor, MPH, BSN, RN, CNN

Chronic illness, especially kidney failure, is difficult for parents and children alike. It is important to TELL THE TRUTH to patients. What children can handle depends on their age and developmental maturity. Parents must know what their children can understand and how they will react to certain medical procedures.

Even a toddler can be given basic explanations and shown the response expected during a procedure. Jasmine, age 3, used to scream whenever she had blood drawn from her central line catheter for transplant lab work. Now, she has settled down and likes to hold small supplies, empty syringe holders or paper packages (trash toys) for play and rotate the filled lab tubes. When a child gets an injection, the shot hurts. Don't lie. But injections don't hurt too long and diversion is a great distraction. Offer stickers or other rewards for cooperation and thank the child for helping. As children get older, your explanations can become more complete, as you try to answer his questions honestly, and allow him increased participation in the care. Most nurses and doctors will (and definitely should) take the time to explain a task to the child and discuss what is expected. Questions should be answered - the child's and yours. Communication is so very important for all involved, especially since children who are given instruction appropriate for their age are less anxious and more cooperative during treatments (Berry, 1993).

Dealing with Outward Signs of Kidney Disease

The clinical signs of kidney disease vary depending on the diagnosis and the amount of kidney function remaining. For many conditions, there may be no obvious symptoms. When kidney function is decreasing, the child may appear pale from the anemia related to the kidneys inability to produce the hormone that encourages our bodies to make new red blood cells. Parents may need to learn to give Epogen¨ or Procrit¨ injections to treat the anemia. He may bruise easily, or seem more tired than usual. There may be decreased appetite, nausea, vomiting, weight loss and a delayed growth response in height.

Your doctor or nurse can help you follow your child's growth by looking at the growth chart graph in his medical record. Delayed growth, especially in infants and small children, may be treated with nasogastric (NG) or gastrostomy (G-tube) tube feedings during the night with a special pump. Extra calories are added to infant formula by use of supplements and oil. Children with Alport's disease may need to sit near the front of the class to hear better. A child wearing a bag appliance over his urostomy stoma, or a child on diuretics or with a urinary tract infection may need frequent bathroom privileges.

Children taking steroids or other immunosuppressive medications are at a greater risk for contracting infections and skin damage from the sun. In addition, some medications cause undesirable side effects such as increased hair growth (for which depilatory creams may help), acne, weight gain, increased fat deposits giving chubby cheeks or a hump on the back of the neck, overgrowth of the gums and short stature. Children do not want to look different from their peers. When they do, parents have a tough job of encouraging self-esteem while maintaining the prescribed treatment.

The most frequent cause of transplant failure in adolescents is non-compliance or failure to take the prescribed immunosuppressive medications to prevent rejection. Without these medications, the body will follow its normal response and reject the kidney transplant as a foreign tissue. Having your child return to dialysis because he "refused to take" or "forgot to take" his transplant medications is a very sad situation for both parents and child. Bribing and threatening are usually not successful. Remember to be truthful and factual about the purpose of medications and the consequences of forgetting doses.

Nutrition and Your Child

Nutrition for children with renal disease, especially renal failure, needs to be carefully monitored for the best growth and development. The first year of life is the most important, because adequate nutrition is needed for linear and head growth to allow the brain to grow for normal development. Calorie and protein requirements are higher for children than adults. The child with renal disease may have altered metabolism and need special nutrients. If the appetite is very poor, and growth delay is significant, tube feedings may be necessary. School-age children can be taught to assist with G-tube feedings. Dietary limitations may vary depending on the specific kidney disease or condition.

In hypertensive children, those on steroids, or transplant recipients, salt restriction is necessary to help control blood pressure and prevent complications. Children on dialysis may have limitations on fluid intake, potassium and dairy products. A healthy well-balanced diet, high in food value should be encouraged for all children. Empty calorie snacks such as chips and candy should be restricted. The parent should encourage good nutrition by setting the example for their children. We live in a fast paced age with burgers, fries, pizza and fried chicken sadly being the mainstay of many American diets. As obesity and inactivity increase in our society, more and more children are being diagnosed with high blood pressure. When the parent also has high blood pressure, the child is more likely to continue to be hypertensive as he reaches adulthood. Blood pressure must be controlled to prevent further complications. Your child will follow your example; make sure it is a good one. Children learn more by what they see you do than by what they hear you say. 

Medicines for Your Child

Medications for treating kidney disease depend on the kidney problem and the amount of kidney function. Your child will be taking several medications. School-age children and parents should learn their names, purpose and the side effects that may develop.

Some common groups of medications for children with kidney disease are listed below:

Can My Child Exercise?

Physical activity and exercise are very important parts of caring for children with kidney disease. While there may be some specific limitations, according to the individual diagnosis or other medical problems, daily exercise as tolerated should be encouraged to promote healthy heart action. Heart disease is a major complication of kidney disease, contributing to about half of all deaths of patients on dialysis. Habits developed in childhood are more likely to persist in adulthood. Walking, swimming, bike riding, bowling or soccer for 30 minutes at least 3 times a week are good examples of heart-healthy exercise. Daily walks can be a fun and healthy family activity. Talk with your child's doctor about how to develop a suitable exercise program.

How Do I Tell My Child?

I turned to the experts for advice on how to tell your child. I consider parents of children with kidney problems to be both the heroes and the experts. It is among this group of parents with whom I work that I have met some of the most courageous and admirable individuals.

Brittany, now age 12, was born with only one kidney, which did not develop well. Her parents felt sad, afraid, overwhelmed, depressed, shocked, but hopeful about her condition and set out to research all they could find to educate themselves. As they studied, they brought their questions to the pediatric nephrologist in whom they had confidence, and together, made informed decisions about their daughter's care. They elected to try home peritoneal dialysis using the cycler at night (CCPD), with both parents learning the procedures and sharing the workload. When Brittany was 3 years old, she received a kidney transplant from her mother. After nearly 9 years, she still has excellent function from the transplanted kidney. As Brittany became older, she learned to be involved in the decision-making process.

Her parents taught Brittany that sometimes things happen beyond our control, like her kidney disorder. They believe that with God's help, they could overcome the challenges and live as full a life as possible. Their recommendation to other parents in talking to children is honesty. Don't sugarcoat it, because even the smallest issue to an adult might be a very big deal to a child. They have encouraged Brittany throughout her life to be a grateful, cheerful and loving individual. She has pursued many interests and now excels academically and musically by playing the violin, piano and singing. She has done gymnastics and currently is enjoying basketball. Brittany's family feels children with kidney disease should do as much as they can to experience life at its fullest, as long as the experiences are healthy and safe.

As Brittany matures, she is taking more responsibility for her care and management, always under her parents' watchful eyes. When a question arises of what is safe to do, the doctor is consulted, the situation discussed and the advice followed. Her parents hope by maintaining open communication and always being available for their daughter's questions, she will be more likely to follow the rules concerning medications and limitations. I have known Brittany all her life. She has a beautiful spirit and is a happy child, to which I credit my heroes, her parents.

Benjamin, like Brittany, was born with his kidney disorder. He was diagnosed with posterior urethral valves, a congenital but not hereditary condition. His parents elected to do CCPD until he was large enough to receive a kidney transplant from his father. He is now 8 years old and doing well with his transplant of five years. Benjamin is the youngest comedian that I know and could probably make it on the stage with his imitations alone. He has also done gymnastics and modeling and has a positive self-esteem. His parents agree that telling the truth is most important. If the child sees you worry or crying, he will be more anxious and upset. Their recommendation to you as parents is to be honest, optimistic and add as much humor as possible to the situation. Benjamin has been taught more about his kidney disease as he has become older. His parents cite their faith, family, friends and the medical team for support during the difficult times.

J. Shipman writes about her son Robert and his life growing up on dialysis and with a transplant after being diagnosed with the same problem as Benjamin at birth. She has encouraged her son to play baseball, to sing in the choir and school chorus, to work and graduate from high school. Robert's struggle with adolescence was similar to most other teenagers, compounded by rebellion over eating french fries and taking medications. Ms. Shipman states there comes a time when even the most compulsive and controlling parent must let go, like when your teen obtains a drivers license. Her job was to teach him how to take care of himself then let him make his own choices.

with kidney disease, your goal is to help him live as full and happy a life as possible. Achievement of this goal is different for every child. Remember that children want to play and be happy. Children with kidney disease can do almost anything. It is attitude and motivation that directs the path. People with kidney disease are athletes, actors, legislators, doctors, nurses and teachers, businessmen and executive director of your own AAKP national organization.

Two pearls I offer to you when dealing with your child and family:

It is not what happens to you in life that is important, but what you do with what happens to you.

When life gives you lemons, make lemonade.

Judy Taylor, MPH, BSN, RN, CNN is a Pediatric Renal Transplant Coordinator at the University of South Florida in Tampa, Florida. She also serves as a member of the AAKP Board of Directors.

This article originally appeared in aakpRENALIFE, Vol. 16, No. 1 - July 2000.

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