Kids Adapting to Lupus

Kids Adapting to Lupus

About 25 percent of lupus begins in childhood and adolescence, posing special problems. Pain, fatigue, the interruption of school and sports activities, limitations of mobility, change in appearance, and the feeling of being different are all particularly difficult for kids.

Lupus in childhood threatens the normal development process of gaining social and academic skills, the formation of a solid identity, and the development of independence and separation from parents. Very young children have rather concrete notions of disease, essentially that it is a result of accidents or catching germs from someone else. The more abstract reasoning required to understand lupus as an autoimmune disease does not usually develop fully before adolescence. In addition, children are focused on the immediate aspects and consequences of their disease, such as whether or not they can go to school or spend time with their friends or engage in any particular activity that day or that week. It's not until adolescence that children begin to understand the way in which their disease might interfere with their future goals. Depression stemming from this perception of future loss may be more of an issue for adolescents.

Lupus in children is essentially the same disease as that which occurs in adults. Some newborn infants of mothers with SLE experience abnormally slow heart rhythms and temporary skin rashes, the so-called "neonatal lupus syndrome", this is caused by antibodies that originate in the mother, but affect the newborn. This is not true lupus. In childhood, as in adulthood, true lupus can cause joint pain, fever, fatigue and butterfly rash as well as serious organ dysfunction, such as kidney or central nervous system involvement. Test results are similar, and treatment recommendations for childhood lupus are essentially the same as that for adults.

In most parts of this country, children with lupus are treated by pediatricians and often by a rheumatologist with special training in pediatric lupus. Generally, by the time patients reach adolescence, their care is transferred to an adult rheumatologist. However, the timing of this transfer may vary considerably and should be managed sensitively. Another significant difference with the treatment of lupus in children has to do with the effects of prednisone and other corticosteroids; calcium and vitamin D supplements are used to avoid or delay future problems with osteoporosis.

Over time, the adolescent patient should assume an increasingly autonomous role in her or his own care. They should be expected to do the talking in an appointment and have answers directed to them rather than to their parents. They should gradually gain responsibility for handling medications and scheduling their appointments while parents monitor the situation. They also have a right to confidentiality that should be respected.

However, as much as kids want to become independent from their parents, they are anxious about taking these steps, whether it be going away to college, or communication directly with their doctors, making appointments, or generally assuming responsibility for this aspect of their lives. They may forget their medications, appointments, and their need for rest and sleep. These are opportunities to provide additional guidance, reminders, and encouragement and not to usurp control of their healthcare. These are also good opportunities for open dialogue about the issues of independence and expectations of support. Studies of other chronic childhood diseases, such as asthma and diabetes, suggest that kids often fail to take their medications in the prescribed dosage. It is very important to involve children as active participants in their own health care.

Within the family, it is important to not treat the child with lupus differently than other children. For example, kids should not be over-sheltered or protected from the usual expectations or developmental challenges. Parents commonly feel guilty about their children with lupus because of the influence of genetic factors in its onset. However, they need to manage that guilt in such a way as not to become over-involved in the life of their ill child to the point of suspending their lives or neglecting the need of their other children.

Kids benefit from having some contact with adults who have had lupus and yet managed to live full and gratifying lives. One patient, Vicki Croke, now a journalist for the Boston Globe, has written about the importance of discovering the example of Henrietta Aladjem. When Vicki was quite ill she met "Hennie", whose disease by then had been in remission for many years, Vicki's hope was restored. Kids above all need a vision for themselves in the future and adult role models to help provide it. They also benefit from having contact with other kids with illness, either in support groups or in chat groups on the Internet. One nine year-old with lupus, Jessica, has a web site in which she described her illness, the disruption in her activities, the teasing about prednisone-related weight gain and her recovery. The teasing improved when her mom, a nurse, came to school and explained the illness to her class.

Fortunately, children and adolescents are extremely resilient. With the support of their family, friends, and doctors, most manage to negotiate the extra challenges imposed by illness. Sometimes counseling or psychotherapy can be helpful as well. At times parents need counseling even more than their children. If more difficulties or anxiety persist, psychiatric intervention and / or referral are recommended.

By Malcom P. Rogers, MD.

=========================================================== This information is for"informational purposes" and is not meant to be used for medical diagnosis. Alwaysconsult your physician on matters such as this.