When Children are Diagnosed with Lupus

South Africa, Girl (10-11) checking temperature with thermometer
momentimages/Getty Images

It can be a mystery for parents. One week, their child is playing freeze tag and shooting hoops. The next, he complains of being exhausted, moans about sore knees and ankles, and maybe sports a rash across his cheeks and the bridge of his nose. Most likely, it's nothing. But there is a chance that the child might have lupus.

Who Gets Childhood Lupus?

Somewhere between 5,000 and 10,000 US children under 18 years of age have lupus.

Child lupus, an autoimmune disease, is most often diagnosed between the ages of 11 and 15. Children of any age can have lupus, however, and lupus can strike children of any race or ethnicity.

Nearly 80% of children diagnosed with lupus are girls, but it is believed that lupus in boys is often overlooked.

Lupus affects children similarly to the way it affects adults in that it expresses itself differently in each person. Some research suggests that more organ systems are involved in pediatric lupus.

Symptoms and Diagnosis

Symptoms in children are also similar to symptoms in adults, the most common of which are fatigue and achiness. Obvious disease symptoms include fever, "butterfly" rash, and kidney involvement. Most cases are successfully diagnosed when an ANA blood test is included among diagnostic tests.

Treatment of Childhood Lupus

Once diagnosed, most children will be treated by a healthcare team that will create a treatment plan based on the specific needs of the patient.

Team members might include a rheumatologist, nephrologist (kidney problem specialist), nurse practitioner, social worker, physical therapist, and a mental health specialist.

Treatment plans often focus on controlling symptoms and preventing flares, since lupus is not a curable disease. Flares can increase feelings of fatigue and illness, and can also harm the body’s organs.

Medication is usually included in any lupus treatment plan. Mild cases in children might require only steroids and antimalarials (usually Plaquenil). More moderate cases might require steroids in higher doses. Immunosuppressives may be included, which allow for smaller doses of steroids.

For severe organ or life-threatening disease, immunosuppressives such as cyclophosphamide are often needed.

While health care teams routinely recommend rest, limited physical activity and good nutrition for kids with lupus (mainly to allow recovery from active disease or to counter medicine side effects), there is no good evidence indicating these things prevent flares in kids with lupus. Medicine is the single most important thing for preventing flares. Sunlight avoidance also is important for most patients, as photosensitivity is a big concern among patients.

Living – and Playing – with Lupus

Parents and children usually react quite differently when lupus is diagnosed. For the parents, there a sense of guilt and increased worry, as they wonder if the disease is a result of poor parenting (it’s not) and whether their child will lead a normal life (they can).

As a parent, you're obviously concerned with your child's treatment.

Kids, in contrast, worry about whether they can join activities and keep up and play with their friends. They are also concerned about what others will think of them. Misconceptions of classmates (like "I can catch his lupus") can be a big fear of a child with the disease.

Appearance can also be a factor since some drugs used to treat lupus have side effects such as weight gain and acne.

With careful consideration and determination, many children with lupus can lead a normal childhood.


LUPUS AT A YOUNG AGE: A child’s needs and concerns are different and the same Duncan, Nancy. Lupus Now. August 2004.