Juvenile idiopathic arthritis (juvenile rheumatoid arthritis)
Treatment & Care
At Children’s, we know how difficult a diagnosis of juvenile idiopathic arthritis can be, both for your child and for your whole family. That’s why our physicians are focused on family-centered care: From your first visit, you’ll work with a team of professionals who are committed to supporting all of your family’s physical and psychosocial needs. We’ll work with you to create a care plan that’s best for your child.
Children with different types of juvenile idiopathic arthritis have different symptoms, and these vary from one child to another. But no matter what type of JIA your child has, the overriding goal is the same: to extinguish the “fire” of inflammation as rapidly as possible to give your child’s joints and bones the possible best chance to develop normally.
Medical treatment for JIA often starts with drugs called nonsteroidal anti-inflammatory drugs (NSAIDs), which help relieve symptoms such as pain, swelling and stiffness. Among the most common NSAIDs are ibuprofen and naproxen, in therapeutic doses (that is, higher than the over-the-counter versions). For children with mild arthritis, this may be the only medicine they need. But if your child has more severe arthritis, her doctor may recommend one or more of the following:
- disease-modifying anti-rheumatic drugs (DMARDs), which slow down -- or even halt -- the progress of JIA as well as help relieve its symptoms. The workhorse of this group ismethotrexate, which has a long track record of safety and is the basis of most arthritis therapy in both children and adults. Taken once a week orally or by injection, methotrexate is highly effective and generally well tolerated,. Other DMARDs include sulfasalazine (brand name Azulfidine) and leflunomide (Arava).
- biologics, which are a relatively new class of DMARDs made of synthetic proteins. The major category within biologics is tumor necrosis factor (TNF) blockers, which counteract high levels of inflammatory proteins in arthritis patients. Etanercept (Enbrel), infliximab (Remicade) and adalimumab (Humira) are the most widely used. Another promising group is interleukin-1 (IL-1) blockers like anakinra (Kineret).
- corticosteroids, which are powerful anti-inflammatory drugs that can be very effective when injected directly into the affected joint. Doctors sometimes prescribe corticosteroids in tablet form or by IV for short-term use, but avoid high doses over the long term because of serious side effects. Prednisone -- which has a number of brand names -- is the most common of the corticosteroids.
Though essential, medication will probably be just one part of your child’s treatment program. Other therapies help increase her mobility and strength, and protect her overall health. These may include:
- physical therapy, to improve and maintain your child’s muscle and joint function
- occupational therapy, to improve her ability to perform day-to-day activities
- regular eye exams, to detect early changes of eye inflammation
- nutritional guidance, to ensure your child is eating healthful foods -- and enough of them -- if JIA or the medications are affecting her appetite
Very few children with JIA will ever need surgery. If a joint becomes too damaged and painful, doctors may recommend repairing it or replacing it with an artificial one (though joint replacement surgery usually isn’t done until adulthood, because a child’s body is still growing). Another option is to surgically remove the inflamed lining of the joint -- a procedure called synovectomy -- but again, this is quite rare.
When your child is facing a chronic illness, like JIA, it’s understandable that you may want to explore all the treatment options, even those that aren’t part of conventional medicine. Such treatments -- generally known as alternative or complementary medicine -- encompass such things as acupuncture and special diets or dietary supplements, and some people with arthritis do seem to benefit from them.
However, there’s little research showing how effective or safe most of these treatments are, and no evidence that any are as effective in fighting JIA as the drugs your child’s doctor may prescribe. If you’re interested in exploring an alternative treatment for JIA, be sure to talk it over with your child’s doctor first and -- if he agrees the treatment may have value and is not harmful -- always keep him up to date on how it’s coming along.
If your child’s treatment plan includes occupational therapy, she will learn more about everyday ways to protect her joints, minimize pain, conserve energy and exercise. The occupational therapist will be the best source of advice on things you and your child can do at home to make living with juvenile idiopathic arthritis easier, including:
- Applying heat or cold: Many children with JIA experience stiffness when they wake up in the morning, or after a nap. Taking a hot bath or shower, or using a heating pad, often eases this discomfort. And although most kids do better with warmth, some may respond better to cold treatments, such as with a bag of frozen peas. Be careful to protect the skin from burns or frostbite.
- Wearing splints: Your child’s occupational or physical therapist may create splints for her to wear at night (resting splints) or during the day (working splints). These devices help keep joints in the correct position and relieve pain, and are most commonly used on the knees, wrists and fingers.
- Exercising: Your child’s occupational or physical therapist will teach her exercises to do at home, usually on a daily basis. Range-of-motion exercises keep joints flexible, while strengthening exercises build muscle. Helping your child set up and stick to a daily exercise routine will ensure she gets the full benefits of this therapy.
- Eating healthfully: Children with JIA can have trouble with their appetite, so make sure your child is eating enough to maintain a healthy weight and good energy levels. A balanced diet is key, so stock up on things like fresh fruit and vegetables, as well as calcium-rich foods like milk, cheese and yogurt.
Coping and support
We understand that you may have a lot of questions when your child is diagnosed with juvenile idiopathic arthritis. Will it affect my child long term? What do we do next? We’ve tried to provide some answers to those questions in these pages, but there are also a number of other resources to help you and your family through this difficult time.
Patient education: From the very first visit, our nurses will be on hand to walk you through your child’s treatment and help answer any questions you may have. And they’ll also reach out to you by phone, continuing the care and support you received while at Children’s.
Parent to parent: Want to talk with someone whose child has had juvenile idiopathic arthritis? We may be able to put you in touch with other families who have been through similar experiences and can share their experience.
Faith-based support: If you are in need of spiritual support, we’ll help connect you with the Children’s chaplaincy. Our program includes nearly a dozen clergy representing Episcopal, Jewish, Lutheran, Muslim, Roman Catholic, Unitarian and United Church of Christ traditions who will listen to you, pray with you and help you observe your own faith practices.
Social work and mental health professionals: Our social workers act as a sort of “hub” for support services: connecting you and your child with everything from financial assistance to mental health counseling. They will work one-on-one with you on such issues as:
- making sure your child’s school provides her access to education
- finding federal and state programs to help cover health care costs
- locating temporary housing, if you’re coming to Boston from out of town
- even tracking down scholarships to arthritis camps!
And just as important, you can talk with our social workers about the impact of JIA on you, your child and your whole family.
Help with transitioning to adult care: If your child’s JIA continues into early adulthood, she’ll likely face the daunting prospect of leaving the pediatric setting and changing over to a health care team that handles adult patients’ needs. The Center for Adults with Pediatric Rheumatic Illness is a collaborative effort between Children’s and the Brigham and Women’s Hospital, in which specialists from both hospitals work to ease the transition to adult care.
Support groups can be especially important for children with JIA, and Arthritis Foundation can help you find one in your area. In addition, the foundation -- which is the largest private, not-for-profit contributor to arthritis research in the world -- offers spring and summer camp programs that give kids with arthritis the chance to meet and play with others who share their experience.
On our For Patients and Families site, you can read all you need to know about:
- getting to Children’s
- navigating the hospital experience
- resources that are available for your family
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