Jul 6, 2017, 3:09:59 PM CDT Jan 23, 2023, 4:44:00 PM CST

Living with Lupus: Answers to questions about Lupus in children

Teenage girl at the doctor while nurse listens to her heart Teenage girl at the doctor while nurse listens to her heart

Lupus is a type of autoimmune disease, which means a person’s immune system attacks healthy tissues and organs instead of just harmful invaders like bacteria, viruses and fungi. In systemic lupus erythematosus, also known as SLE or just lupus, the immune system may attack and inflame the skin, joints, kidneys, lungs, nervous system and other organs.

About 20 percent of people with lupus develop the disease before age 20, so it can affect kids and teens. It is very rare in children under the age of 5. In teens and adults, the disease is much more common in females, especially those with African, Hispanic, South and Southeast Asian and Native American ancestry.

Doctors do not know the cause, but it is thought to be influenced by a combination of several factors, including:

  • A genetic predisposition to have an overactive immune system
  • Environmental factors
  • Hormones, especially estrogen in females
  • Major stress, infection or a drug reaction

Children with lupus tend to have more symptoms when they’re diagnosed and can develop more damage from the disease, since they will live with the chronic condition longer than adults.

What are the signs and symptoms of lupus in children?

Doctors sometimes call lupus “the great imitator” because its earliest warning signs are also common in other, more mild or temporary illnesses.  Symptoms can also come and go, disappear completely or change over the course of the condition. Because of these factors, diagnosing childhood lupus often requires the expertise of pediatric rheumatologists, doctors specially trained in diagnosing autoimmune diseases like lupus.

Early signs of lupus in children may include:

  • Achy or swollen joints
  • Fatigue
  • Fever over 100˚F
  • Fingers that turn white or blue from cold or stress
  • Loss of appetite
  • Mouth ulcers (or nose ulcers)
  • Muscle aches
  • Sun sensitivity
  • Skin rashes (A butterfly-shaped rash across the cheeks, called malar rash, is common in lupus; discoid rash – round, red, scaly patches on the face, arms, scalp or ears – is also common.)

Later or more severe symptoms may include:

  • Chest pain (from lung inflammation)
  • Dark urine (from kidney inflammation)
  • Fluid around the heart or lungs (seen on a scan)
  • Headaches (sometimes severe, from brain inflammation)
  • Memory problems (brain inflammation)
  • Problems within the blood: anemia/easy bruising, low platelets, low white blood cell count
  • Seizures (brain inflammation)
  • Shortness of breath (lung inflammation)
  • Swelling of the feet, legs and/or eyelids (kidney inflammation)
  • Weight loss

A blood test called the ANA test, which detects a certain type of antibody, is positive in 95 percent of people who have lupus, but it can also be positive in people with other autoimmune diseases.

 A person with a positive ANA test plus a few of the following symptoms is likely to have lupus:

  • Anemia
  • Arthritis
  • Discoid rash
  • Fluid near the heart or lungs or in the abdomen
  • Immune system problems (low platelets, WBCs)
  • Kidney problems
  • Malar rash
  • Mouth/nose ulcers
  • Neurologic problems
  • Sun sensitivity

If my child is diagnosed, what is the treatment?

Your child’s treatment will depend on what symptoms he or she is experiencing and what parts of his or her body are affected by the disease.

For joint or muscle pain, your child’s doctor might recommend over-the-counter pain relievers like Tylenol®, Advil® or Motrin®. To fight fatigue and fever, your child may be prescribed anti-inflammatory steroids. Some drugs used to prevent and treat malaria can help treat skin rashes and joint pain. And, in severe cases, drugs that suppress the immune system can help stop an attack on healthy organs or tissues, but these medications can have many side effects.

How can I help my child manage living with lupus?

While having a chronic disease like lupus can be stressful for a kid or teen and his or her family, there is good news. For most people with lupus, certain positive health habits can reduce symptom flare-ups and help minimize the impact of the condition. These include:

Things to avoid:

  • Alcohol, smoking and drugs
  • Becoming overly busy or stressed
  • Tattoos or body piercings, which can get infected
  • Birth control pills that contain estrogen
  • Contact with sick people
  • Sun exposure

Things to do:

  • Eat a healthy diet
  • Get enough rest, and take time for extra rest when tired or ill
  • Get regular exercise
  • Practice good hygiene, like washing hands often to avoid infections
  • Work with a healthcare team (doctors, nurses, rheumatologists and other specialists) to find the best treatments and lifestyle adjustments

Reassure your child that most kids and teens with lupus can live normal lives – and encourage your son or daughter to get involved in clubs at school, approved sports and social activities. Discuss your child’s condition with his or her teacher, administrators, school nurse and coaches.  And ask your child’s doctor to refer you to a therapist if your son or daughter seems especially depressed or anxious.

Learn more about helping your child live with a chronic condition and how to encourage healthy habits. Sign up for the Children’s Health newsletter and have helpful articles and tips sent directly to your inbox.

Can women with lupus have children?

For many years, doctors told women with lupus to avoid pregnancy, fearing it would worsen the course of the mother’s disease and pose risks to the baby. Thanks to increased knowledge about treating and managing lupus – including before, during and after pregnancy – most women diagnosed with lupus can have successful, safe pregnancies and healthy babies.

Here are some important tips if you’re a woman with lupus considering pregnancy:

  • Make sure your condition is under control. It’s best to wait at least six months after experiencing any kidney problems or major lupus flares to plan conception for your best chance of a healthy pregnancy.
  • Ask your doctor about medications. Some medications you may be taking are not safe for your baby or may increase your chance of miscarriage. Talk to your doctor about which ones are safe and which ones must be stopped or switched.
  • Find an OB who specializes in high-risk pregnancy. Lupus can cause certain pregnancy complications, like high blood pressure or pre-term birth. That’s why it’s important to find an obstetrician and a hospital with experience managing high-risk pregnancies.
  • Check your insurance. Ensure your health insurance will cover prenatal, postpartum and infant care.
  • If you become pregnant, attend all recommended prenatal appointments and tests. This will reduce your risk of complications or help your doctor identify them early so you and your baby can be properly monitored and treated.
  • Take care of yourself during and after pregnancy. Get plenty of rest. Eat a healthy diet. Don’t drink alcohol or smoke. And immediately report any unusual symptoms or concerns. Avoid added stress if you can.
  • Know the risk of neonatal lupus. Approximately 3 percent of babies born to moms with lupus will have this condition. Often, it’s temporary. Your newborn may have a rash and abnormal blood counts, but the condition usually disappears by the time the baby is 6 to 8 months old. In rare cases, these babies can develop an abnormal heart rhythm that could require a pacemaker.
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