Lupus in Children & Teens: Parent FAQs

By: Marla Guzman, MD, FAAP​ & Grant Syverson​​, MD, FAAP

Lupus is a condition that causes uncontrolled inflammation or swelling. It can affect many different parts of the body in unpredictable ways. Most people diagnosed with lupus are adults. However, childhood-onset lupus (meaning the disease develops before the age of 18) accounts for up to one one-fifth of lupus cases.

Read on to learn more about lupus in children and teens, and how help keep it under control.

What is lupus?

Lupus (systemic lupus erythematosus or SLE) is a chronic auto-immune disease. This means the immune system produces antibodies that attack healthy cells and tissues. Normally, our antibodies target foreign invaders like viruses or bacteria to keep us healthy—they do not normally target our own cells. The antibody attacks create inflammation that can cause damage to the skin, joints, and internal organs like the kidneys, brain, heart and lungs.

What causes lupus?

There is no known cause of lupus, but both genetic (hereditary) and environmental factors are believed to both play roles in developing lupus.

Who gets lupus?

Lupus more commonly affects females, although males can develop the disease as well. In fact, in childhood-onset lupus, the proportion of males affected is actually higher than it is in adults.

It is estimated that as many as 10,000 children in the United States are dealing with the disease. Lupus is more common in non-Caucasian children. Children with lupus may have a family member with lupus or another auto-immune condition.

What are the signs and symptoms of lupus?

Lupus can affect any part of the body, and each child may have different symptoms. The younger children are, the more aggressive lupus may be. Some symptoms may include:

The kidneys are often inflamed in children with lupus, but this usually doesn’t cause symptoms unless the inflammation is severe. Your child’s
pediatric rheumatologist will monitor your child for kidney problems frequently using blood and urine tests and checking blood pressure.

Besides kidney issues, other serious complications can develop. These include developing blood clots and inflammation in the central nervous system (brain or spine). Blood clots are most common in the legs and may cause pain, swelling, redness, or warmth. If the central nervous system is involved, your child may have headaches, seizures, or behavioral changes.

How is lupus diagnosed?

The diagnosis of lupus is not always straightforward and requires a thorough work-up with a pediatric rheumatologist. They will make a diagnosis of lupus based on your child’s symptoms, physical examination findings, and your child’s laboratory test results.

Laboratory test results in lupus may include:

• Low numbers of white blood cells, red blood cells, and platelets

• Elevated markers of inflammation

• Abnormal kidney or liver function tests

• Protein or blood in urine tests

• Low complement levels (the complement system is a part of the immune system)

• Positive antibodies such as ANA and anti-double stranded DNA

*NOTE: A positive ANA result without other signs, symptoms, or laboratory findings of lupus IS NOT an indication that a child has lupus. A positive ANA can be seen in a percentage of healthy children or when a child has a viral infection.

Is there a cure for lupus?

Although currently there is no cure for lupus, there are treatments​ that can help manage the disease.

Specialized care for lupus

Because lupus can affect so many organ systems, your child will likely see other specialists along with their pediatric rheumatologist. These specialists might include:

• Pediatric nephrologists (kidneys)

• Pediatric dermatologists (skin)

• Pediatric hematologists (blood)

• Pediatric pulmonologists (lungs)

• Pediatric cardiologists (heart)

What are lupus flares?

Children with lupus may experience “flares,” a worsening of symptoms also known as exacerbations. These flares cause symptoms to get worse and they can be brought on by infections, excessive sun or ultraviolet (UV) light exposure, or when your child is tapering off lupus medications.

How do I manage my child’s lupus?

If your child is diagnosed with lupus, your child’s rheumatologist will prescribe
medications to help manage symptoms and keep the immune system from overreacting

Along with medications, there are other things you can do to help keep your child’s symptoms at bay. For example:

Limit sun exposure. Since sunlight (UV light) can worsen lupus symptoms, it’s important for your child to wear sunscreen daily (make sure it’s SPF 30 or higher) and to wear hats, long-sleeved shirts, and pants when they are in the sun.

Maintain a healthy lifestyle. Some medications may cause weight gain, so eating a healthy, balanced diet and getting regular physical activity are crucial. A healthy lifestyle can also increase your child’s energy, help them sleep better, and boost their mood.

Avoid infections. People with lupus are immunosuppressed, which means their immune system has difficulty working. This can be either from the lupus itself or from medications. Because of this, children with lupus may be more prone to getting infections than other kids, so it’s extra important to encourage good hand-washing and to stay away from sick people. If your child develops a fever of 100.4 degrees or more or develops symptoms of an infection, be sure to let their pediatric rheumatologist know right away.

Keep vaccinations current. It’s important to keep your child’s vaccinations up to date, but keep in mind that people who are immunosuppressed shouldn’t receive live (activated) vaccines. Check with your pediatrician and pediatric rheumatologist if you’re not sure about the type of vaccination your child needs.

To keep your child healthy, additional vaccinations that aren’t part of the regular vaccination schedule but prevent other infectious diseases are also recommended. These include the annual influenza vaccine (inactivated form) and the pneumococcal vaccine.

How else can I help my child with lupus?

Living with lupus doesn’t mean that your child can’t lead a normal life. In fact, kids with lupus are encouraged to continue living like they normally would.

Your child may require a
504 plan for school that will allow them certain accommodations if needed. Contact your child’s school district to learn more about this.

Since lupus is a disease that affects multiple organ systems, your child may have to see many different types of specialists, which can cause them to miss school. You can work with your child’s school and pediatric rheumatology team to try to coordinate avoiding multiple absences.

More information

About Dr. Syverson

Grant Syverson, MD, FAAP, attended the University of North Dakota School of Medicine and completed his residency in Pediatrics and fellowship in Pediatric Rheumatology at the Medical College of Wisconsin. He is a Pediatric Rheumatologist at Sanford Health in Fargo, ND and an Assistant Clinical Professor at the University of North Dakota School of Medicine. He travels and sees patients in both North and South Dakota. In addition to providing clinical care he also serves on the Executive Committee for the AAP Section on Rheumatology and PREP Rheumatology Advisory Board and is a member of the American College of Rheumatology (ACR) and Childhood Arthritis and Rheumatology Research Alliance (CARRA).​