Emotional and psychological implications
There is perhaps no more distressing an experience for a parent and the child with nephrosis than to helplessly watch the swelling of the child's body — the hallmark of the disease. For the young child, the sudden change in appearance is devastating to his or her self-image.
The young, preschool-aged child, often just learning to talk, is most vulnerable to the emotional stresses of the illness. Nephrosis may appear to come out of the blue, without any obvious associated illness. Parents may feel that they have done something wrong, either for having allowed the child to eat the wrong food or being exposed to another child with a cold.
Although the initial illness is generally brought under control by treatment, it frequently recurs. Alternating periods of health and disease extending over several years compound both the emotional and financial burden of this illness. The side effects of treatment are also distressing. Finally, there is ever-present concern that the condition could be fatal, although this is extremely rare.
Sometimes behavioral problems occur
And even though most children become free of the disease, some children with nephrosis develop behavioral problems. Young children, who have had the onset of their illness between the ages of 2 and 5 years and have had a chronic, relapsing illness over several years, may develop challenging behaviors, learning difficulties in school, or fear of hospitals or the medical office setting. In some children, prednisone seems to affect mood or cause hyperactivity. Parents should maintain a consistent approach toward the discipline of the child with nephrosis so that he or she is not treated differently than other children in the family.
The nephrotic child should be permitted to lead as normal a life as is possible and should be encouraged to develop independence and maintain contacts with playmates. Children with a chronic illness may have fewer opportunities to develop relationships with other children because of hospitalizations, frequent doctor visits, and school absences.
Healthy peer relationships can help
For this reason, it is especially important to help the child develop healthy peer relationships and ensure ample opportunities to interact with their developmentally-appropriate age groups outside of school, rather than withdrawing into a shell because of anxiety about changes in physical appearance or possible teasing by playmates. It may help to include siblings and same-aged friends into discussions of the child's illness, framed in language that is appropriate to the level of understanding by children.
The young child's perception of a mysterious, usually painless disease, which causes massive swelling of the body, can stimulate flights of imagination and thoughts that are far removed from reality. It may be difficult for young children to understand a disease of an internal organ, such as the kidney. Explanations should be simplified, using concrete language while avoiding medical terminology. Diagrams provided by the physician or nurse involved in your child's care can help the child visualize the kidney and urinary drainage system in a way that aids understanding. If your child is in the hospital, a child-life worker can help during an explanation of the illness by using a doll that shows the internal anatomy of the body.
Children with chronic illnesses often experience a loss of control
A child with a chronic illness such as nephrotic syndrome, which can be cyclical in nature, frequently has his or her privacy invaded and experiences a loss of control over his or her environment. This may happen after the sudden appearance of a relapse and the need for blood tests or hospitalization. Parents are naturally concerned about their child's health and may sometimes lean too far in the direction of being overly protective. This may interfere with the development of increasing independence.
Over-protectiveness may also delay the need for the child to learn more about his disease and to take personal responsibility for certain aspects of management, such as taking medications, testing urine, writing down the results on a calendar or weighing oneself each morning. To help address this, parents can ensure that children are given choices whenever possible, regarding issues both related and unrelated to medical care. However, do not offer choices when none are available, such as dietary restrictions and compliance with medications. When dietary salt restriction is necessary, it should be applied firmly and consistently as "doctor's orders." However, the child should not be made to feel guilty if high-salt containing food has been eaten or if a relapse occurs. Food should not be linked to a system of reward or punishment.
Because of edema or weight gain due to prednisone, the nephrotic child often looks different. This can be very disturbing to a child's self-image. Parents naturally tend to respond to this by spending more time with the nephrotic child or providing special privileges. If this happens, siblings may feel left out or assume that their sibling may have a fatal illness. It is only natural that thoughts arise about the possibility of the child dying from kidney disease. The child may even mention such thoughts. This should be discussed openly and honestly if the child brings it up.
Dealing directly with the child's worries about his or her health is essential for maintaining trust rather than sending a message to the child that there are secrets shared between his or her parents and the physician. Most hospitals have professional staff with specific training for providing guidance to parents on ways of dealing with some of the above problems.
What about financial assistance available from the Kidney Foundation or a state or local agency?
The Kidney Foundation does not have the resources to allow it to give direct grants of financial assistance. The money collected by the Foundation is used for education about kidney disease and for research into the causes and treatment of kidney disease, including minimal-change nephrotic syndrome. In some states, individual programs may have been initiated by families and advocacy groups, and the local National Kidney Foundation chapter would know about these. Furthermore, the American Kidney Fund may be able to offer one-time grants to eligible families to partially offset the financial burden of medications, laboratory tests, or hospitalizations. These matters can be discussed with the social worker affiliated with our Division of Kidney Diseases.