If your child has systemic lupus erythematosus (S.L.E.), she is not alone. Of the more than 1.5 million Americans with this serious chronic illness, an estimated 5,000 to 10,000 are diagnosed under the age of 18. In this age group, boys also get lupus. The scenario changes in adulthood, when females are far more susceptible.
Approximately 1 in 3 children with lupus have mild disease, but most have a moderate disease that may be severe at times, but usually responds well to treatment. With proper diagnosis and treatment only a small number of children develop severe and life-threatening lupus.
There is no single laboratory test that can prove a child has this complicated illness. Symptoms are often vague, and come and go over time. Because of these starts and stops lupus can be hard to diagnose at first and requires a careful physician to follow and treat it.
Why does your child have lupus?
Researchers are working to figure out why lupus happens to certain people and not to others. Most likely, a person inherits genes that make him or her more susceptible to this illness, and events in the body or the environment such as hormone surges, infections, stress, or exposure to sunlight trigger the illness. Lupus is not contagious—a person can’t “catch” or “give” lupus to another person.
What kinds of problems might your child develop?
Lupus is a systemic and chronic disease, which means that all parts of the body can be affected, and the disease doesn’t just go away. But no two cases of lupus are exactly alike. Some children get stomach upset, joint pain, and stiffness. Others have kidney problems in which the immune system attacks these two fist-sized organs critical to filtering wastes from the blood. Since there’s no way to know which parts of the body will get sick, keep in close touch with your lupus doctor.
What tests will your child need?
Regular tests of blood, liver and kidney functions should be done because they show how these important organs are doing—as well as changes that you or your child might not even be aware of. One of the most important things that you can do for your child is to find a doctor who knows about lupus and what the tests mean.
What medicines might your child have to take?
Researchers are actively looking for less toxic and more precise medicines to treat lupus. While corticosteroids such as prednisone often can prevent and stop many of the complications of lupus by suppressing the immune system, they also cause unwanted side effects such as: retention of fluid (bloating and weight gain), increased appetite, and heightened risk for infection. Over-the-counter NSAIDs (nonsteroidal anti-inflammatory drugs) can help control aches and pains. The doctor should help you and your child balance the benefits and risks of taking these and other lupus medicines.
What can I do to protect my sick child?
Here are some strategies to keep in mind.
How can you get the best outcome for your child?
Try to find a pediatric rheumatologist who is familiar with lupus and with whom you and your child can share worries and concerns. Be sure your child keeps doctors appointments, takes her medicines, and has regular examinations and blood tests to look for problems. With early and aggressive treatment most children with lupus do well and have normal lifespans.
But it is important to have an experienced lupus doctor. At places where they know how to treat lupus, more than 9 out of 10 children will live at least 10 years and in most cases, for many, many years.
How will living with lupus affect my family?
There are many challenges to having a child with a serious chronic illness. Parents may feel overburdened. Healthy children and spouses can feel neglected. Devote time to your sick child, but make sure you and your other children and spouse get the attention that they deserve. Call on friends and family for support. Your doctor can refer you to trained counselors for extra help.
Thomas Lehman, MD