According to the Arthritis Foundation, approximately 25,000 children and adolescents have lupus, or a related disorder. Lupus is a condition that board-certified pediatric rheumatologist Dr. Ruy Carrasco and pediatric nurse practitioner Shelby Brooks, CPNP-PC treat frequently here at Pediatric Rheumatology Consultants.
As May is Lupus Awareness Month, we want to share what we know about the condition, and its many forms, as well as how we help our young patients living with it to lead a better quality life.
What is lupus?
Lupus is a chronic condition and an autoimmune disorder where the body’s immune system adversely attacks itself, resulting in a variety of symptoms. The parts of the body most commonly impacted by lupus are the skin, joints, lungs, heart, and kidneys.
Women, starting at around the age of 15 through 44 years, tend to be at a higher risk for developing lupus.
What are the possible complications of lupus in children and how are they treated?
Systemic lupus erythematosus (SLE), the most common form of the disorder, can affect nearly any organ system in the body.
Common symptoms of SLE/lupus include:
- A “butterfly,” or malar, rash across the cheeks and bridge of the nose
- Joint pain
- Easy bruising
- Kidney problems
- Hair loss
- Sometimes seizures
We often successfully treat lupus symptoms and complications with medications, such as corticosteroids, hydroxychloroquine (Plaquenil), traditional disease modifying anti-rheumatic drugs (DMARDs) (i.e., methotrexate), and biologic DMARDs as complications of lupus can include kidney damage, heart disease, and even death.
How can parents help their child live with lupus (at-home remedies/lifestyle choices)?
Parents/caregivers are a vital source of support for lupus patients.
First, they should check in with their child emotionally as sadness, anxiety and depression can be seen with many chronic illnesses such as this one. We recommend parents seek a mental health counselor for their child if they are frequently experiencing these emotions. Counselors can help patients to identify coping mechanisms and stress management techniques, as stress often exacerbates lupus. Support groups can also be comforting for children seeking others who understand their same situation and can share anecdotal advice.
As lupus patients typically have photosensitivity, sunscreen with at least SPF30 is always highly recommended, especially throughout the summer. Long sleeves are also helpful to shield from sun exposure, and there are several products readily available that can be washed into clothes to add SPF protection. Hats should also be worn frequently to cover the face and prevent malar rashes.
Staying current with your child’s vaccinations is highly recommended as well, especially the COVID-19 vaccine. Remember, patients on biologic therapies CANNOT have live vaccines (i.e., MMR, varicella, intranasal flu vaccines).
One key dietary recommendation for children with lupus includes eating well-balanced healthy meals as often as possible under the suggested nutrition guidelines from the American Academy of Pediatrics (AAP).
Are there any recommended adjunct therapies for lupus (acupuncture, etc)?
Patients with lupus are encouraged to pursue safe, non-prescription pain relief methods in addition to their prescription treatment. Patients should trial different non-prescription therapies to see what is most helpful. Some therapies that are safe to try include:
- Occupational or physical therapy
- Warm baths with epsom salts
- Light exercise, even when experiencing pain
- Stress-reducing activities such as watching a favorite show or movie or reading a book
What is the long-term outlook for children with lupus?
The good news is that the long-term outlook for children with lupus is excellent, and the majority of patients have a full life expectancy.
It is important for lupus patients to receive medical care regularly from a board-certified rheumatologist throughout their life, take medications as prescribed, and follow a healthy lifestyle with a balanced diet and exercise.
Pediatric Rheumatology Consultants treats a wide range of autoimmune disorders and diseases of the musculoskeletal system in children and teenagers. Our team includes the expertise of Dr. Carrasco and Shelby Brooks, CPNP-PC along with the compassionate care of our experienced nurses and infusion nurses. To schedule an appointment with us please click here.