Childhood-onset lupus accounts for 10 to 20 percent of all lupus cases. It rarely occurs in youth under age 14 and almost never in those younger than 5. However, when lupus starts in childhood it tends to be a more severe disease than in adults.1
There are up to 11 new cases of lupus diagnosed in children each year, compared to 16,000 new cases diagnosed in adults. Girls are diagnosed more often than boys, but gender disparities are not as strong as in adults. Children of color develop lupus at higher rates than Caucasian children in similar patterns to adults with lupus.2,3
Childhood lupus is not the same as neonatal lupus. Neonatal lupus is not considered true lupus, but a reaction to the mother’s antibodies in the womb. The symptoms of neonatal lupus usually disappear in the first months of life.3
How lupus is different in children
In childhood-onset lupus, the following symptoms are more common than in adults:3
- Butterfly rash (malar rash)
- Mouth and nose ulcers
- Kidney issues, including high levels of protein and red blood cells in the urine
- Seizures
- Low blood platelet count (thrombocytopenia)
- Low red blood cell count (hemolytic anemia)
- Fever
- Swollen or enlarged lymph nodes (lymphadenopathy)
Children experience Raynaud’s syndrome and dry eyes and dry mouth (sicca) half as often as adults with lupus.3-4
Who treats childhood lupus?
Children who are diagnosed with lupus generally see a doctor called a pediatric rheumatologist. These doctors specialize in treating children with autoimmune diseases like lupus, and diseases of the muscles, joints, bones, and tendons. Depending on your child’s symptoms, you may also see other specialists, such as a pediatric nephrologist (for kidney issues) or a pediatric cardiologist (for heart issues).
Challenges of lupus in children
Children experience more serious kidney and nervous system complications than adults and have lower survival rates. Children also have fewer treatment options than adults. This can make it more difficult to control their disease, lower the risk of long-term organ damage, and improve quality of life.5,7
Treatment for childhood lupus
Many different types of drugs are used to manage lupus because it can cause a wide variety of symptoms. Your child’s doctor will prescribe a mixture of drugs targeted to your child’s unique combination of symptoms. The most common medicines used to treat lupus in children include:7
- Anti-inflammatories (NSAIDs)
- Antimalarials
- Anticoagulants
- Immunosuppressants
- Steroids
- Belimumab (Benlysta), a B-lymphocyte stimulator protein inhibitor
Because your child is still growing, your doctor will want to be careful about avoiding drug side effects with long-term consequences. Children with severe lupus often need steroids more frequently and at higher doses than adults, which can damage the body while suppressing the disease and saving a child’s life at the same time.2
Non-medical lifestyle choices can also help control your child’s lupus symptoms, such as:1,2
- Wearing sunscreen (SPF 30 or higher) and clothing that protects from the sun including wide-brimmed hats, long sleeve shirts, and pants.
- Avoid germs by washing hands often and staying away from people with colds or the flu
- Sleeping at least 9 hours each night and taking breaks during the day as needed
- Play outside in the early morning or late evening when sunlight is less strong
- Staying current on non-live immunizations
- Getting an eye exam every 6 to 12 months
While there is no cure for childhood-onset lupus, research is ongoing to find new treatments and better understand the disease.
