As a parent with a child with lupus, you may be asking yourself, “What can I do to best support my child and take care of their lupus?” Luckily, lupus is a team sport, and you will not be alone:
The Rheumatologist
When a child is suspected to have lupus, they will usually be referred to a pediatric rheumatologist. A pediatric rheumatologist is a pediatrician with expertise in diseases where the immune system is either attacking the body by mistake (autoimmune disease) or too actively (autoinflammatory diseases). Once the diagnosis is confirmed. your child will be given specific medications to help treat the symptoms and control the disease. It is important for the child to take the medications as prescribed so that damage does not occur. Your child’s rheumatologist will also see your child regularly to see how the medications are working, make changes as needed, and check to see if your child is experiencing any side effects of the medications.
Since lupus is an autoimmune disease that can affect multiple parts of the body, your child’s rheumatologist may involve a variety of additional health care professionals.
The Other Doctors
Based on what parts of the body are affected by lupus, your child may see doctors who specialize in that organ.
If their kidneys had inflammation or were damaged, they may see a kidney doctor or nephrologist.
If their lungs were affected by lupus through inflammation of the lungs, they may see a lung doctor or pulmonologist.
If they have rashes that need treatment with a cream or ointment, they may see the skin doctor or dermatologist.
All children with lupus should also see their primary care physician to address routine health needs and problems not related to their lupus, like vaccinations.
Other Health Care Professionals
Other people in your child’s healthcare team include nurses, specialty pharmacists, physical therapists, social workers, and psychologists. Specialty pharmacists can help get approval for some medications that treat lupus since they sometimes require special insurance approval or prior authorization. Physical therapists can help your child strengthen their muscles to improve joint pain, movement, or completing the activities of daily living. Social workers can help provide community resources when things outside the hospital make dealing with lupus challenging, and support with school and accommodations. The diagnosis and treatment of lupus can be challenging for children to deal with, especially if it affects their daily life. Pediatric psychologists can help children learn to cope with a chronic illness and adjust to a new normal.
The Patient
Remember, depending on your child’s age, they are a part of the team too. Empowering them to understand and take ownership over their health and lupus will help prepare them to take care of themselves independently as adults.
Lupus is a chronic, multi-system disease of inflammation that can consist of flares and remissions. Expert care is key to controlling this unpredictable disease. Nationwide Children's Hospital's Division of Rheumatology has a multidisciplinary Lupus Clinic for the care of children with lupus. This clinic is a “one-stop shop” for children with lupus and includes rheumatologists, nephrologist, pulmonologist, Specialty pharmacist, psychologist, social worker and nursing staff working together.
What Can I Do Besides Take my child To Appointments?
Get involved with the lupus community: Finding other children or young adults who have lupus can help both you and your child feel less alone.
Help them take ownership over their health as they get older: Teach them the necessary skills to take care of their own health as they get ready to transition to adulthood
Encourage them to stay active and be a kid: Staying active will help keep them healthy.
Make sure they take their medications and wear sunscreen - sun exposure and missing medication can cause lupus symptoms to flare, so addressing these issues is important!
Vidya Sivaraman, MD, is a pediatric rheumatologist at Nationwide Children's Hospital and Associate Professor of Clinical Pediatrics at The Ohio State University. She is the Associate Fellowship Director of the Rheumatology Fellowship Program and Director of Quality Improvement in Rheumatology. Her research interests include pediatric ANCA-associated vasculitis, Localized Scleroderma, and vaccination in immunocompromised children.
Madison Hoenle
Pediatrics Resident, Rheumatology
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