Helping Your Child With Lupus: From Team Care to Sun Smarts
Systemic lupus erythematosus (SLE) is a challenging disease given the unpredictability of flares, the potential for involving any organ system in the body, the side effects of some of the medications used for treatment and the stress of living with a potentially life-threatening disease.
A care team is vital to a child with lupus. This team usually consists of the patient and family, pediatric rheumatologist, nurses, pediatrician, physical and or occupational therapists, a social worker and psychologist, as well as other specialty doctors such as a nephrologist, neurologist or cardiologist – depending on organ involvement. A school nurse, teacher or school counselors could also be included in this team. Friends and family also play a major role as a support system in this lifelong disease.
Teach Sun Smarts
A child with lupus must always protect themselves by wearing sunscreen, sun protective clothing, sunglasses and wide-brim hat all year long. They may have to engage in outdoor activities early in the morning or wait until later in the day in order to avoid complications from the sun. Allow your child to continue in the activities that he or she enjoys if they feel they can. Learning on their own what their limitations may be is more helpful in the long run than a parent deciding for them what they can and cannot do.
Although a child with lupus may be independent in many ways, taking care of their health requires vigilant supervision. Taking all doses of medication as directed, having blood and urine tests when requested, keeping appointments, avoiding the sun, wearing sun block and learning the warning signs of a flare are very important in preventing disease flares and potentially active disease that may lead to irreversible damage.
Allowing some independence is good, but be involved enough to ensure that your child is taking medication and is not ignoring symptoms of the disease. Once your child enters the teen years, he or she should be included in discussions and help make decisions with the rheumatologist regarding symptoms, tests and medications. Be sure that you and your teen ask questions and understand as much as possible. There may be times that your child should speak to the doctor privately with concerns. It is also helpful to keep a notebook with information and a list of non-urgent questions to ask at your child’s next appointment.
Allowing your child to talk with others who have lupus, especially those who were also diagnosed as a child and are now adults, can help your child learn to deal with the emotional aspects of the disease. Meeting and talking with other children their age who have lupus may also help them understand that they are not alone, and give them an outlet to share their feelings and experiences.
Remember, the goal of parenting a child with lupus is to return them to normal activity. Empowering your child to recognize symptoms, giving them access to team care, and offering support while keeping a close eye, can help make that happen.
For more information on Nationwide Children’s Hospital Rheumatology Team Care, Services and Research, click here.