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There are many ways you can help children and their families get the care they need.
If your child is being treated for juvenile dermatomyositis (JDM) at Boston Children's Hospital, your entire family is involved. As an interdisciplinary team, we partner closely with families to understand and address any individual, family or school issues which may arise as we work together to optimize your child's adjustment to the challenges of living with JDM.
If your child has JDM, there are three possible outcomes:
Here at Children's, we have extensive experience in treating juvenile dermatomyositis. Within our Rheumatology Program, JDM is actually the most common condition we see (second only to arthritis). Compared to other institutions, which report patients in full remission at about 33 percent, nearly 90 percent of the kids treated at Children's will wind up in full remission.
While there's currently no known cure for juvenile dermatomyositis, we've found that using a combination of immunosuppressive therapies can put the disease into remission over time, especially if we work to get the condition under control as early as possible. We aim to get your child into full remission and off medicines over time.
We tailor treatment for your child's juvenile dermatomyositis to the stage of his condition and his body's initial response to treatment. Prescribed treatment methods may include:
medications, such as glucocorticosteroids and methotrexate, which treat the inflammatory disorder, and hydroxychloroquine, which treats the skin-related aspect of the condition (dermatomyositis)
physical and occupational therapy to improve muscle function and strength
liberal use of sunscreens to prevent further irritation or damage to the skin
nutritional support to ensure an adequate diet
alternative therapies, such as reiki, acupuncture and massage in order to make your child more comfortable
Will my child's skin return to normal?
If your child has a visible rash or other skin problems relating to JDM, you may be wondering, “Will my child look normal again?” Fortunately, with treatment, most skin problems clear up, and your child will look and act like any other child his age.
What are the expectations regarding my child's quality of life?
This is a question unique to each family, and our team welcomes the opportunity to discuss any of your concerns. We expect vast majority of children will be able to live a full and active life, engaging in all (or most) childhood activities. Your child's experience should be much the same as any other kid his or her age.
What is the long-term outlook for my child?
It's important to keep in mind that most kids with JDM need to see a rheumatologist regularly. Most children come back to Children's or visit a rheumatologist in their area at least once every other year once they are in remission.
We place great emphasis on ongoing care and we will work with you to establish a relationship with a rheumatologist in your area. The Center for Adults with Pediatric Rheumatic Illness (CAPRI) is a collaborative effort between our hospital and Brigham and Women's Hospital. CAPRI is devoted to the multidisciplinary treatment of adults with childhood-onset arthritic and inflammatory disorders. Specialists from both hospitals collaborate as we transition patients into CAPRI when they reach adulthood, allowing them to see some of the same doctors as they did when they were children.
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”