Juvenile Myositis Program

• In a single visit your child will see experts in inflammatory disorders (rheumatologists), physical therapy and research.
• We partner with experts in the skin (dermatology) and nervous system (neurology) as needed to give your child complete care.
• Seattle Children’s has the only comprehensive pediatric rheumatology program in our region (Washington, Alaska, Montana and Idaho).

• Accurate diagnosis is the first step to effective treatment. Some children have the condition for months or years before they are correctly diagnosed. Our team will examine your child carefully and do the tests needed to fully understand and diagnose their condition. 
• Juvenile myositis affects each child differently. We provide care for your child’s unique needs.
• We offer a full range of treatments. These include immunotherapies to calm or strengthen the immune system, physical therapy to build strength, skin care and emotional support.

• From first visit through follow-up, our team will work with you to give your child seamless care.
• Juvenile myositis is a lifelong diagnosis. Once your child is in remission, we see them less often — once or twice each year. We help you connect with a rheumatologist for care closer to home, if needed.
• We care for your child from birth to 21. When the time comes, we will help them transition to a rheumatologist who treats adults.
• Our team helps your child and your family through the challenges of this chronic condition. When possible, a parent volunteer helps link families with support and resources through the Cure JM Foundation.
• Seattle Children’s serves children and families from around the Northwest and beyond. We can help with financial counseling, education, housing, transportation, interpreter services and spiritual care. Read about our services for patients and families.

• We are active in the Childhood Arthritis and Rheumatology Research Alliance (CARRA). This research group works to understand causes, improve care and find cures for autoimmune conditions like juvenile myositis.
• Your child will have the chance to help us collect data about patients so we can learn more about the disease and improve treatments.
• The researcher on our team, Christian Lood, runs the Lood Lab at the University of Washington. His lab researches the cause of juvenile myositis, focusing on the part of cells that produce energy (called mitochondria). The Lood Lab studies the role of mitochondria in causing muscle damage and calcium deposits under the skin and around the joints (called calcinosis). The aim of this research is to create new therapies to prevent disabling disease.
• The Lood Lab also works to identify biomarkers for juvenile myositis, with the goal of tailoring treatment to your child’s specific needs.

To accurately diagnose your child, we may:

• Ask you and your child about their medical history
• Check for rashes and muscle weakness during a physical exam
• Test blood for signs of an autoimmune problem, like myositis autoantibodies
• Take pictures inside your child’s body using an MRI to look for muscle inflammation and damage

Based on your child’s symptoms, we may also:

• Study how your child swallows to see if the condition is affecting their voice, eating or swallowing
• Check for lung problems, using pulmonary function testing (PFT) or a CT scan of the chest
• Check your child’s heart using an echocardiogram
• Assess the health of your child’s muscles and nerve cells using electromyography
• Remove and test a small piece of muscle (biopsy) to verify the diagnosis

The main treatment for juvenile myositis is medicine (called immune system modulators) to modify (either increase or decrease) your child’s immune system. We use a range of options, such as:

• Corticosteroids given by mouth or IV
• Disease-modifying antirheumatic drugs (DMARDs) like methotrexate, azathioprine or mycophenolate mofetil
• Intravenous immunoglobulins (IVIGs)
• Biologic medications including rituximab, abatacept and tumor necrosis factor (TNF) inhibitors (such as infliximab and adalimumab)

We check your child’s skin carefully and recommend the treatment that is right for them. Options include skin creams and immune therapy. As needed, your child sees our dermatologist for care.

During visits to the Juvenile Myositis Program, a physical therapist uses standardized tests and measures to assess your child’s abilities and strength. This helps your providers track if your child is improving over time with the prescribed medicines and change treatment if needed.

Physical therapists will determine if your child needs play and exercise during additional therapy visits to strengthen their muscles, keep joints flexible and reduce pain. Physical therapy is a key part of treatment for many children with juvenile myositis. We have the skills and right-sized equipment to work with patients from the very smallest babies to teens.