Quick overview of the symptoms of lupus in your child
Symptoms your child may exhibit include
- A rash appearing on their cheeks and across the bridge of their nose, known as a “butterfly” or malar rash.
- Changes in finger and toe color when you’re cold, anxious, or stressed (Raynaud’s).
- Fatigue.
- Headaches.
- Fevers.
- Weight loss.
- Hair loss.
- Sores appearing in their mouth or nose.
- Swelling and pain in their joints (arthritis).
These symptoms can develop gradually or appear suddenly. Remember that, on their own, each symptom may have many different causes. Doctors usually look for multiple symptoms before diagnosing lupus. Usually, a single symptom like fatigue is not enough on its own.
Children with lupus may have low blood cell counts, specifically, reduced counts of:
- Red blood cells are associated with anemia.
- Platelets associated with thrombocytopenia.
- White blood cells associated with leukopenia.
Low blood cell counts can result from inflammation or autoantibody attacks, and they may also be a side effect of certain lupus medications.
What exactly is Pediatric Lupus?
Lupus is an autoimmune disease where the immune system mistakenly attacks the body’s tissues and organs. It leads to inflammation, causing swelling and irritation in areas such as the joints, skin, kidneys, blood cells, brain, heart, and lungs.
Some individuals have a genetic predisposition to develop lupus. Factors such as infections, specific medications, or sunlight exposure can trigger the condition. Although there is no cure for lupus, treatments are available to help control symptoms.
Lupus is an autoimmune disease that can be diagnosed at any age, including in children and teenagers. Doctors often refer to it as “lupus in children” when diagnosed before 18. Although lupus generally affects children and adults in similar ways, children with lupus tend to experience more severe or active forms of the disease, characterized by increased inflammation and symptoms, as well as potential organ damage. They might also undergo more intensive treatments, such as higher doses of medications, and face long-term side effects, particularly from extended corticosteroid therapy.
What causes lupus in children?
Researchers are still investigating the exact cause of lupus in both children and adults. At present, they are investigating a two-hit theory, which proposes that two factors combine to trigger the disease.
- Genetics: increases a person’s likelihood of developing lupus.
- Environmental factors: such as hormones, viral infections, or sunlight exposure (UVA/UVB), can trigger lupus and start the disease process.
How is lupus diagnosed in children?
Doctors diagnose lupus through:
- Discussing with your child (and yourself) the signs and symptoms you have observed.
- Doing a thorough physical exam.
- Conducting blood and urine (pee) tests to detect inflammation markers and indicators of potential autoimmune diseases, like antinuclear antibodies.
Other factors a doctor might consider include:
- A family medical history that includes lupus or other autoimmune diseases.
- The age at which lupus signs and symptoms first appeared.
- How long have the symptoms been present?
If your child shows any symptoms of lupus, consult a pediatrician. While some signs, such as fever, can be caused by various factors and may resolve on their own, others, such as hair loss or a unique facial rash, may indicate a more serious condition. The doctor will assess these symptoms to determine the correct diagnosis.
How is lupus in children treated?
Your child’s healthcare team can do a lot to help them feel better daily and prevent complications. However, there is no cure for lupus at present. Treatment primarily aims to:
- Relieving your child’s symptoms.
- Preventing your child’s immune system from targeting vital organs.
- Overseeing your child’s complete physical and mental well-being.
A group of experts will collaborate on creating a personalized care plan for your child’s specific needs. These experts may include:
- A specialist in pediatric rheumatology.
- Nurses.
- Mental health professionals.
- Physical therapists.
- Other medical specialists.
Medications Used to Treat Lupus in Children
Many medications are available to treat lupus in both children and adults. Your child’s healthcare team will recommend the most suitable medicines based on the severity of their lupus, including the extent of organ damage, and their symptoms. Options may include:
- Corticosteroids (prednisone) to manage inflammation.
- Hydroxychloroquine, an anti-malaria drug used to manage disease flare-ups.
- Immunosuppressants
- Pain relievers such as ibuprofen or naproxen.
- Calcium and vitamin D supplements are recommended to prevent osteoporosis, which can be a potential side effect of long-term corticosteroid use.
What steps can be taken to prevent lupus?
Since the exact causes of lupus are not fully understood, prevention is currently impossible. However, you can assist your child in managing the disease and reducing the risk of flare-ups by:
- Ensuring your child gets sufficient sleep.
- Administering your child’s prescribed medications as directed by their healthcare team.
- Reporting to their provider immediately about any new or changing symptoms.
- Ensuring your child wears protective clothing and sunscreen outdoors, as sunlight can trigger an immune response that may lead to a lupus flare.
Learn How to Protect Your Child
Living with pediatric lupus
Learning that your child has lupus can bring a range of emotions, such as shock, fear, confusion, and overwhelm. Take time to process your feelings and lean on your child’s healthcare team for guidance and support as you determine the next steps. Significant advancements have been made in diagnosing and treating pediatric lupus. With appropriate treatment and regular follow-up, your child can enjoy simple pleasures, like summer ice cream or playing with friends, without lupus taking over their life. Remember to care for yourself as you care for your child. It is common to neglect your own health while caring for a loved one, but focusing on your well-being enables you to be a better caregiver. Schedule regular checkups with your provider and set aside a few minutes daily for self-care.
Frequently Asked Questions
What potential complications can lupus cause in children?
Treatment can significantly reduce your child’s risk of complications. However, some children with lupus may develop issues such as kidney inflammation and damage (lupus nephritis); inflammation of the lung lining (pleurisy) or the heart sac (pericarditis); and inflammation of the central nervous system (brain and spine). Sharp chest pain is a common sign of pleurisy or pericarditis. Symptoms of central nervous system inflammation include headaches, behavioral changes, seizures, and blood clots, usually in the legs. Indicators of kidney inflammation and damage include pain, swelling, warmth, and redness or discoloration in the affected area.
What are the next steps following my child’s treatment?
The primary aim of lupus treatment is to reach remission (no disease activity) or low disease activity (LDA). When remission or LDA is achieved, your child experiences no symptoms or has fewer noticeable symptoms, reducing the risk of organ damage and hospitalization.
What impact will lupus have on my child’s life?
As a parent, you might worry about how lupus impacts your child’s life. Will it complicate school or prevent them from enjoying sports and activities? Could it affect their friendships or social interactions? These are typical concerns, but for many children, managing lupus becomes a regular part of life instead of a barrier. Thanks to advancements in diagnosis and treatment, children with lupus can still enjoy hobbies and chase their goals just like their peers.
Will my other children develop lupus too?
Although lupus is not directly inherited from parent to child, it often occurs within families. Nonetheless, the chance is low, making it uncommon for two siblings to both have lupus. Although blood tests can assist doctors in diagnosing lupus, they are not particularly helpful for children who show no symptoms of the disease.
How can I care for my child?
Your child’s healthcare team will advise you on how best to support them in managing lupus. Generally, it’s beneficial to track and record your child’s symptoms and possible triggers, then share this information with their care team. Educate your child about their condition with language they understand, and maintain an open-door policy so they feel comfortable asking questions or sharing concerns. Encourage your child to see a counselor to help them process feelings and develop coping strategies. Make sure your child applies SPF 30 or higher sunscreen daily, even when it’s cloudy, and wears protective clothing and hats outdoors. Teach simple infection-prevention practices, promote regular physical activity, and discuss potential accommodations with your child’s school. Remember, caring for your child includes caring for yourself, so consider joining a support group for parents of children with chronic illnesses.
