Caring for Kids With Chronic Kidney Disease

Children with chronic kidney disease are affected in myriad ways. CKD is any condition that causes reduced kidney function over an extended period of time, and children with this disease may have a negative self-image and relationship problems with family members due to the stress of living with a chronic illness. The condition can lead to behavior issues 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 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 when treated with a kidney transplant or dialysis—can can make these challenges worse. The good news is that 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 these children may need additional guidance and understanding.

Children are a fairly small proportion of the 37 million Americans living with chronic kidney disease, but most children who develop kidney failure have underlying congenital anomalies of their kidneys and urinary tracts. As with nearly every other health disparity, African American children with kidney disease receive differential medical care. They are referred less quickly for kidney transplant than white children, and they spend longer on dialysis than non-Black children.

If your child has been diagnosed with chronic kidney disease, you are likely feeling distressed and confused. These feelings are normal. Once you accept your child’s new reality, you can develop practical ways to cope with the day-to-day aspects of it, starting with these helpful tips:

Educate yourself about the disease and its treatments.

• Learn as much about your child’s disease and its treatment as possible. Share this information with your child. You’ll be surprised at how much even very young children can understand. Many times they will accept information more easily than an adult.
• Encourage your child to ask questions—of you, their doctors and other health professionals. Your child might have questions you haven’t thought about or were afraid to ask because you thought they sounded silly.
• Don’t try to explain more than your child can understand. Don’t lie either, and don’t apologize for treatments or procedures that have to be followed.
• Help your child understand that the doctors, nurses, social workers, dietitians, laboratory personnel and everyone else is on his or her side. They all want to help your child feel better, even if that means they have to do things that will cause temporary pain or discomfort.

Participate in your child’s care.

• Develop a spirit of mutual respect and cooperation with health professionals.
• Write all the details of your child’s medical history, including dates. This will make it easier for you each time you come in contact with a new doctor.
• Try to be with your child as much as possible during treatments and any hospitalization that might be necessary. If you cannot be there, arrange for someone else to be present—a relative or close family friend. And make sure to take a favorite book, stuffed animal or special blanket.
• If your child is not talking yet, tape a note to his or her hospital bed or crib with helpful information for the staff, such as favorite foods, special toys or blankets, preferred time and method of taking medicines.

Help your child take control of the illness.

• Try to maintain a normal daily routine, even during hospital stays.
• Help your child understand about doctor’s offices, hospitals, dialysis units and laboratories and how they are used. By helping your child understand the places filled with strange instruments and machines, you can help eliminate a lot of your child’s fear.
• Be creative in finding ways for your child to participate in his or her own care. Your child will feel much more in control if you provide as many opportunities to do so as you can.

Help your child to understand diet restrictions.

• Even a child as young as 2 or 3 can understand about diet if it is explained in age-appropriate terms. Often, a child will be more compliant with dietary restrictions than an adult.
• Have your child make a list of favorite foods and take him or her with you when you talk to the dietitian to see if these foods can be incorporated into the diet plan.
• Don’t ever use bribes or force your child to eat. These tactics rarely work and more often turn mealtime into an unpleasant experience.

Don’t let medicine time ruin your day.

• Even small children will swallow something no matter how distasteful if they know they have no choice.
• A good trick with babies and small children is to use syringes minus the needles to dispense medication. Not only can you measure medicine more accurately, but you can squirt the liquid directly in your child’s mouth instead of having to deal with a teaspoon (associated with food) or a medicine cup. The benefit to your child is in not having to smell the medicine as well as taste it.
• Offer your child a choice of when and where they take their medicine. Once that choice is made, make a schedule and stick to it.
• If medication must be given with meals, don’t give it at the table where your child eats. Find someplace not associated with food and eating, such as the family room while your child is distracted by a favorite TV show.
• If your child is on a fluid-restricted diet, water may be one of the things he or she would like to have most, so reserve part of the day’s fluid intake for a couple of swallows after medicine time.

Keep schools in the loop.

• Talk to school administrators and teachers about the effects of CKD and how they might affect your child’s school day.
• Children with kidney failure may miss school each week because of dialysis and medical appointments. These absences can compound learning problems many children with CKD face. Try to schedule treatments outside of school hours.

Share your experience with others.

• Don’t become isolated. Talk with the renal staff and other families of children with kidney disease.
• Ask relatives and friends for help. Chances are they want to, but don’t know how, and are waiting for you to ask. Sharing your experience will help you find ways to grow with it.