Juvenile Idiopathic Arthritis

  • Overview

    Thirty years ago, we had very few medicines that would change the course of JIA. Now there are effective therapies that allow us to actually control inflammation in a large majority of children, and let them live normal lives.

    -- Peter Nigrovic, MD

    As adults, we tend to think of arthritis -- the inflammation of joints in the body, such as the wrists or knees -- as something our parents might face, not our children. But in fact there are many kinds of arthritis that develop in youngsters. The most common of these belong to a group called juvenile idiopathic arthritis (JIA), which affects about 1 in 1,000 children.

    While it can be upsetting to picture your child with an “old person’s disease,” this isn’t the same kind of arthritis that typically affects adults. Unlike adult rheumatoid arthritis, which lasts a lifetime, JIA sometimes goes away by the time a child grows up. But because it can potentially harm bone development in the growing child, JIA poses different risks, too -- which is why it’s important to diagnose it early and treat it aggressively.

    • Juvenile idiopathic arthritis (formerly called juvenile rheumatoid arthritis, or JRA) occurs in children 16 or younger.
    • It affects girls more than twice as often as boys, and the children at highest risk are 2- to 3-year-olds.
    • Unlike other kinds of arthritis (such as septic arthritis, which is caused by infection), JIA has no known cause -- this is what “idiopathic” means.
    • JIA is an autoimmune disorder, meaning the body’s own immune system is attacking tissues in the joints and sometimes other parts of the body.
    • While JIA is sometimes mild, in some children it can cause significant joint and tissue damage and have serious complications if not treated appropriately.
    • There is no cure for JIA; however, in many cases doctors can now control the inflammation so well that no damage occurs.

    How Children’s Hospital Boston approaches juvenile idiopathic arthritis

    JIA encompasses many types of arthritis, each with its own clinical pattern. At the same time, each child responds differently to both the illness and the medications used to fight it. At Children’s, our rheumatologists see more than 2,500 JIA patients annually, providing broad experience with which to identify and treat your child’s unique illness.

    Here at Children’s, our rheumatologists believe the inflammation of arthritis needs to be extinguished as quickly as possible to avoid injury to your child’s cartilage and allow for normal growth. Children’s is involved in multicenter studies of aggressive early care in JIA, and is a pioneer in the use of emerging therapies such as anakinra, one of a new class of drugs called biologics.

    Finally, Children’s is an innovator in the quality and continuity of care. Our first-of-its-kind Samara Jan Turkel Clinical Center for Pediatric Autoimmune Disease — bringing together autoimmune experts and consulting specialists from throughout the hospital — provides comprehensive, coordinated treatment and support for your child and your family. And for patients who need treatment beyond adolescence, a Children’s rheumatologist heads the Center for Adults with Pediatric Rheumatic Illness at the Brigham and Women’s Hospital, helping to ease the often-difficult transition to the adult health care setting.

    Reviewed by Peter Nigrovic, MD, © Children’s Hospital Boston, 2010

    Boston Children's Hospital 
    300 Longwood Avenue
    Boston MA 02115
    Boston Children's Hospital 
    300 Longwood Avenue
    Boston MA 02115

  • In-Depth

    It’s natural for parents to want to learn as much as possible about any disease their child is facing. In the case of juvenile idiopathic arthritis, however, things can quickly get confusing. JIA is an umbrella term for several kinds of arthritis, each with its own unique features. Moreover, there are different ways to classify these conditions -- and JIA itself is often called by its old name, JRA (juvenile rheumatoid arthritis).

    A good place to start, then, is to simply understand what is happening in your child’s body.

    • Like everyone else, your child has an immune system, a group of organs and cells that work together to fight off outside invaders like germs and viruses.
    • In autoimmune diseases, like JIA, something causes the immune system to begin attacking the body’s healthy cells and tissues.
    • In JIA, the immune system targets the synovium, a special tissue that lines the joints and provides nourishment and lubrication for the cartilage (the “Teflon” cushion that covers the bones where they meet).
    • The immune system’s attack causes the synovium -- which is normally too thin to feel -- to become swollen and “angry,” or inflamed, and the affected joint to become swollen, stiff and sore.
    • If untreated, the inflammation can eat away at the cartilage and surrounding bone. Frequently, it can also affect the way a child’s bones grow, sometimes permanently.
    • In JIA, inflammation can affect joints in any part of the body. It may also affect other tissues and organs, especially the eyes.
    • Typically, there are times when the inflammation goes into remission (gets better or disappears), and times when it flares (gets worse).

    The number and kinds of joints affected, as well as other associated symptoms, help doctors determine what kind of JIA your child has. There are three main subtypes:

    1.       Oligoarticular JIA involves four joints or fewer (“oligo” means “few”) and:

    • is most common and often the mildest type of JIA
    • is sometimes also called pauciarticular JIA (“pauci” is another word for “few”)
    • accounts for about 60 percent of children with JIA, mostly girls
    • typically begins between the ages of 1 and 5
    • tends to involve large joints, such as the knees, ankles and elbows
    • carries the highest risk for eye inflammation (uveitis)
    • sometimes spreads to multiple joints; this is called “extended” oligoarticular JIA, and is more similar to polyarticular JIA

    2.       Polyarticular JIA involves five or more joints (“poly” means “many”) and:

    • accounts for about 20 percent of children with JIA, mostly girls
    • can begin at any age
    • tends to involve the small joints, such as the hands and feet, but can also include the hips, shoulders, neck and jaw
    • is divided into two types, depending whether there’s a certain antibody in the blood: rheumatoid factor negative and rheumatoid factor positive; the latter is typically found in teens and closely resembles adult rheumatoid arthritis

    3.       Systemic JIA involves the body as a whole (this is what “systemic” means) and:

    • is the least common and potentially most serious form of JIA
    • is sometimes called Still’s disease
    • accounts for about 10 percent of children with JIA, boys and girls equally
    • can begin at any age
    • tends to involve the small joints of the hands, wrists, knees and ankles, and sometimes internal organs including the heart, liver, spleen and lymph nodes
    • its symptoms initially include spiking fevers and rashes; the arthritis may not develop until weeks or months later

    Other subtypes of JIA you may hear about include psoriatic arthritis and enthesitis-related arthritis, which involves inflammation where tendons and ligaments attach to bone (one example is ankylosing spondylitis. There’s even an “undifferentiated arthritis” category for conditions that don’t fit into the other subtypes.

    But don’t let yourself get all turned around trying to sort out the categories. Your child’s physician will discuss in detail with you what kind of JIA your child has and why it has a particular name. The main point is that you and your physician should be committed to getting rid of the arthritis entirely in order to let your child’s joints grow well.

    Who is at risk?

    It’s true that certain types of juvenile idiopathic arthritis tend to occur in different groups of children. But when taken as a whole, JIA has three basic risk factors:

    • Age: JIA affects children from infancy to age 16, though rarely when babies are younger than 6 months old. Children at the highest risk are 2 to 3 years old.
    • Gender: Girls are more than twice as likely as boys to have JIA.
    • Genetics: Children with a family member with JIA or another autoimmune disease are more likely to have JIA. However, the risk factor is low enough that it’s extremely rare that two kids in any one family will have JIA.


    While juvenile idiopathic arthritis can’t be prevented, early diagnosis and treatment go a long way toward preventing its potentially serious complications. You and your child also play an important role, by making sure to understand and follow the recommendations of your child’s health care team.

    In a chronic illness like JIA, it can be very challenging to keep up with your child’s appointments and medication schedule, as well as things like physical and occupational therapy sessions. But by doing so -- literally “following doctor’s orders” -- you will ensure the best possible outcome for your child.


    One of the biggest ways that juvenile arthritis differs from adult arthritis is its potential to harm a child’s still-growing bones and tissues. While most children with JIA will do well in the long run, doctors watch this disease very closely -- and treat it aggressively -- because the inflammation of arthritis can have serious consequences for a child’s growing body. These may include:

    • stunted overall growth
    • bones that grow too short or too long
    • jaw growth problems (which can also lead to dental problems, because it can be hard to brush and floss properly)
    • wearing away or destruction of joints
    • inflammation of membranes surrounding the heart or lungs
    • vision loss from chronic eye inflammation (uveitis)
    • increased risk for osteoarthritis and osteoporosis in adulthood
    • sudden hyperactivity of the immune system called macrophage-activation syndrome (an extremely rare, potentially life-threatening problem that occurs only in systemic JIA)

    To prevent these complications, you and your child’s rheumatologist will need to work together to make sure that all evidence of inflammation is gone. With successful therapy, you should expect that your child barely notices he has JIA. If you find that your child still has swollen joints, limp or other symptoms, be sure to bring this to the attention of your doctor. Don’t try to “tough it out” -- your child’s joints have years of service ahead of them, and need to remain in perfect condition to bear the stresses and strains of everything that your child will put them through.

    Long-term outlook

    For families dealing with juvenile idiopathic arthritis 15 or 20 years ago, there was a lot to be afraid of. But nowadays, with active care and highly effective treatments, the large majority of kids with JIA can expect to lead very normal lives.

    About half of children will “outgrow” their diseases (that is, it goes into full remission without need for medications), while others continue to need treatment as adults. A lot depends on what type of JIA your child has: Oligoarticular JIA that stays in just a few joints, for instance, goes into remission about 75 percent of the time, while polyarticular JIA that’s rheumatoid factor positive rarely goes into remission.

    It’s impossible to predict exactly what will happen with your child. But after identifying the distinct pattern of your child’s JIA, your health care team will be able to give you a general idea of the future.


    Even though we know a great deal about JIA and how to treat it, what causes this disease -- and why it happens to some children and not others -- remains a mystery. JIA is thought to be a “multifactorial” disease, which means a number of things have to come together to cause it. Research suggests a mix of genetic and environmental factors: Something in a child’s genes may make him susceptible to JIA, but something else has to happen (an infection, for example) to set it off. Children’s Hospital Boston is now involved in research efforts that are trying to get to the root of childhood arthritis.


    Juvenile idiopathic arthritis is never the same from one child to the next. Symptoms may come and go, or may be continuous. They may occur first in one part of the body, and then another.

    Surprisingly, one thing that holds true for JIA is that joint pain is rarely among its initial symptoms. In fact, if your child complains that one or more of his joints hurt, he probably doesn’t have arthritis, but another illness instead.

    Some of the most common symptoms of JIA include:

    • stiffness and swelling in the joints, especially in the morning or after a nap
    • limping (because the knees and ankles are the most commonly affected joints in JIA)
    • favoring one limb over another (e.g., using the right arm more than the left)
    • excessive clumsiness
    • fatigue or irritability
    • decreased appetite, poor weight gain and slow growth

    There are also distinct symptoms for systemic JIA, which affects not only the joints but the body as a whole. These include:

    • spiking fevers, usually every day
    • rash that comes and goes with the fever
    • swollen lymph nodes (glands)

    JIA can also sometimes cause eye inflammation, called uveitis. This problem can occur without any eye symptoms, or may cause eye redness, eye pain, increased pain when looking at light (photophobia) and vision changes.


    Q: Why did my child get arthritis?
    Though we don’t yet understand why JIA occurs, researchers believe there’s a mix of unknown genetic and environmental factors at work. It’s nobody’s fault when a child develops JIA -- parents can’t do anything to cause it or prevent it.

    Q: Is there any way to screen for JIA?
    No test can show how likely a child is to develop JIA. In addition, no test can prove a child has JIA; instead, JIA is a “diagnosis of exclusion,” meaning the doctor will work to rule out other causes of your child’s symptoms, mainly through a thorough physical exam.

    Q: Are my other children at risk for developing JIA?
    While JIA has a tendency to run in families, it’s not a strongly hereditary disease (something parents pass directly along to their children, like hemophilia). The risk of having two children with JIA in one family is extremely low.

    Q: Can children outgrow JIA?
    With proper treatment and care, about half of kids with JIA do indeed “outgrow” it -- meaning the illness goes into full remission -- with few or no lasting effects. However, this depends a good deal on what kind of JIA a child has, and there’s no test that can predict which children will eventually free themselves of arthritis.

    Q: If JIA lasts into adulthood, is it considered adult arthritis?
    If your child was younger than 16 when her symptoms started, her illness will always be juvenile idiopathic arthritis, no matter how old she gets. In fact, Children’s Hospital Boston treats a number of JIA patients into early adulthood.

    Q: Does arthritis mean my child won’t be able to play sports?
    Exercise is essential for children with JIA, to help keep the joints mobile and the muscles strong. If joint inflammation is controlled early, most children can return to full normal activities, and some of our patients are exceptional athletes. In some patients, however, trauma can trigger a “flare” of arthritis and your physician may recommend sports that don’t put too much stress on joints, like swimming.

    Q: If my child has severe JIA, is there a chance she may eventually need a wheelchair?
    Very few children have arthritis to such a severe degree that a wheelchair becomes necessary. The best way to avoid this is to work together closely with your doctor and make sure that your child is receiving treatment as directed. If your child’s disease is incompletely controlled, make sure your doctor knows this so that therapy can be changed.

    Questions to ask your doctor

    You and your family are key players in your child’s medical care. It’s important that you share your observations and ideas with your child’s health care provider, and that you understand your provider’s recommendations.

    If your child is suffering from arthritis and you’ve set up an appointment, you probably already have some ideas and questions on your mind. But at the appointment, it can be easy to forget the questions you wanted to ask. It’s often helpful to jot them down ahead of time so that you can leave the appointment feeling that you have the information you need.

    If your child is old enough, you may want to suggest that she write down what she wants to ask her health care provider, too.

    Some of the questions you may want to ask include:

    • What kind of arthritis are we dealing with?
    • How is it affecting my child’s body?
    • What is the long-term outlook for my child?
    • Who will be involved in my child’s health care?
    • What are our treatment options?
    • What are the possible side effects?
    • How will we know whether the treatment is working?
    • How will arthritis affect my child’s day-to-day life?
    • What can I do to help support my child’s health and help her cope with her condition?

    For teens

    Having arthritis as a teenager can seem especially tough. You’re heading into a very important time at school, with decisions to be made about college and your future. Your body is already going through a lot of changes. You may be dealing with dating, peer pressure, learning how to drive -- add the day-to-day challenges of a chronic illness like JIA, and it can be a lot to handle!

    It helps to remember that most teens with JIA do the same stuff as other teens, like going to school, doing chores and hanging out with their friends. Plus, you’ll have a lot of backup: Doctors, counselors, physical therapists and other members of your treatment team are all there to support you.

    Take charge of your health: As you get older, you’ll be taking on more responsibility for managing your JIA -- keeping up with medications, sticking to an exercise routine, eating a healthy diet. Though it may seem overwhelming at first, you may find that you feel more in control of your disease, not the other way around.

    Find smart strategies for school: Having JIA may make it difficult to get up and around, so give yourself extra time to get to school and to change classes. Plan stretch breaks to relieve stiffness. These and other coping tricks can take some of the stress out of juggling your illness and your education. Plus, you may be eligible for something called a 504 plan, which lays out what kinds of support you need from teachers and school administrators -- like providing an extra set of textbooks, so you don’t have to lug a heavy backpack between home and school.

    Don’t hide how you feel: Some days you’re just going to feel angry or depressed about having JIA. That’s normal, and being able to talk to your friends or family can help you through the rough patches. But -- especially if these feelings don’t go away -- you may also want to talk with a counselor or therapist. A positive mental outlook is just as important as exercise and a healthy diet in beating JIA.

    Talk to someone who’s been there: Connecting with other teens with JIA is a great way to not only make new friends, but also to pick up tips and strategies for dealing with your illness. Ask your doctor if you might be able to meet up with another patient your age, or check out the Arthritis Foundation web site (www.arthritis.org) for info on events for teens and local support groups.



    Antibody: A special protein produced by the body's immune system that recognizes and helps fight viruses, bacteria and other foreign substances (antigens) that invade the body. Abnormal antibodies that attack the body itself are called autoantibodies.

    Antinuclear antibody (ANA): A type of autoantibody directed against the nuclei of healthy cells. Because these antibodies can be found in the blood of children with JIA, testing for them can be useful in diagnosis.

    Arthritis: Inflammation of a joint, usually accompanied by pain, swelling and sometimes a change in structure.

    Autoimmune diseases: A host of diseases, including JIA, that are caused by the immune system mistakenly attacking the body’s own cells, tissues and organs.

    Biologics: A relatively new class of medications used in arthritis treatment that are based on compounds made by living cells. These compounds modify the action of the immune system by blocking chemicals that fuel inflammation and tissue destruction.

    Cartilage: A connective tissue that covers the ends of bones in a joint. Cartilage helps cushion the pressure of bone on bone while also allowing bones to slide over one another easily.

    Corticosteroids: Powerful anti-inflammatory drugs that can be taken by mouth or intravenously, or injected directly into the affected joints to temporarily suppress the inflammation.

    Disease-modifying anti-rheumatic drugs (DMARDs): A class of medications that can slow or potentially stop the activity of JIA, often by suppressing the overactive immune system.

    Enthesis: Site of attachment of ligament or tendon to bone. Inflammation of an enthesis is called enthesitis.

    Flare: A period in the course of disease in which symptoms become worse. In most children, JIA is characterized by periods of remission punctuated by flares.

    Idiopathic: Of unknown cause or explanation.

    Inflammation: A normal reaction by the body to injury or disease, which results in swelling, redness, pain and swelling.This can occur anywhere, not only in joints.

    Immune system: A collection of cells and proteins that works to protect the body from potentially harmful, infectious microorganisms, such as bacteria and viruses.

    Intra-articular: Into or within a joint; for example, an intra-articular injection.

    Joint: Where the ends of two or more bones meet. Most joints are composed of cartilage, joint space, fibrous capsule, synovium and ligaments.

    Ligaments: A stretchy band of fibrous tissue that binds joints together and connects various bones and cartilage.

    Nonsteroidal anti-inflammatory drugs (NSAIDs): A class of medications that work to reduce pain, fever and inflammation by blocking substances called prostaglandins. Some of the most common include ibuprofen (Motrin) and naproxen (Aleve).

    Oligoarticular JIA: A type of JIA that affects four or fewer joints; formerly known as pauciarticular juvenile rheumatoid arthritis.

    Polyarticular JIA: A type of JIA that affects five or more joints; formerly known as polyarticular juvenile rheumatoid arthritis.

    Remission: A period when the symptoms of JIA improve or disappear completely. Sometimes remission is permanent, but more often it is punctuated by flares of the disease.

    Rheumatoid factor: An antibody that is found often in the blood of adults with rheumatoid arthritis and once in a while in children with JIA. For these children, testing for the antibody may be useful as a diagnostic tool.

    Soft tissue: The parts of the body that are not bone. In the musculoskeletal system, these include ligaments, tendons and muscles.

    Synovial fluid: A thick fluid released by the synovial membrane that acts to nourish cartilage and lubricate for joints and tendons.

    Synovium: A tissue that lines and seals the joint and releases a fluid that allows the joint to move easily; also called synovial membrane. Inflammation of the synovium is called synovitis.

    Systemic: Refers to a disease that can affect the whole body, rather than just a specific organ or joints.

    Systemic JIA: A type of JIA that can affect internal organs as well as joints; also called systemic-onset juvenile rheumatoid arthritis.

    “Helping Your Child with Medical Experiences: A Practical Parent Guide”

    Download a free booklet, “Helping Your Child with Medical Experiences: A Practical Parent Guide”. (Please note that Adobe Acrobat is required.) and read about topics including: 

    • talking to your child about his condition
    • preparing for surgery and hospitalization
    • supporting siblings
    • taking care of yourself during your child’s illness
    • adjusting to life after treatment
  • Tests

    The first step in treating your child is forming an accurate and complete diagnosis. There is no foolproof test for whether your child has JIA, which can be frustrating when you want to know so badly what is making your child ill. But the good news is that the doctors who specialize in joint problems, called rheumatologists, can often diagnose JIA by going through your child’s medical history and doing a thorough physical exam.

    They may also carry out some blood tests to help determine the type of JIA your child has, or to rule other illnesses. Among the most commonly used tests are:

    • antinuclear antibody (ANA), which can detect proteins called antinuclear antibodies in the blood. These antibodies signal that the body’s immune system is attacking healthy tissue, and they tend to show up in children with JIA (though not all children with JIA have them). They also indicate a higher risk for eye inflammation.
    • rheumatoid factor (RF), which, like ANA, can detect a type of protein associated with immune system problems. In this case, it’s called rheumatoid factor. RF shows up in about 10 percent of children with JIA -- typically those in later childhood or adolescence -- and usually points to a form of polyarticular JIA that’s identical to adult rheumatoid arthritis.
    • anti-cyclic citrullinated peptide (anti-CCP) antibody, a relatively new blood test that, like the RF test, can point to JIA that resembles adult rheumatoid arthritis.
    • erythrocyte sedimentation rate (ESR or sed rate), which measures how quickly red blood cells fall to the bottom of a test tube. If the cells to clump together and fall more rapidly than normal, it can signal there is inflammation (like the inflammation of arthritis) in the body.
    • C-reactive protein (CRP), which measures the levels of a special type of protein produced in the liver. Like the ESR, it’s a marker of inflammation. However, children can have normal CRP or ESR results and still have JIA that could potentially injure their joints or eyes.

    Sometimes, doctors want to take a closer look at your child’s actual bones and joints -- either to rule out things like infections, tumors and fractures, or to see what changes JIA may be causing. To do this, they might use such imaging tests as:

    • x-rays, which are good for seeing fractures or other damage to bones, but are less helpful in showing soft tissues, like cartilage.
    • ultrasound, also known as sonography, which uses high-frequency sound waves to create pictures of internal structures. Though ultrasound shows less detail than an MRI, it can be a quick and relatively simple way to check for inflammation in particular joints.
    • magnetic resonance imaging (MRI), which uses a combination of large magnets, radiofrequencies and a computer to produce detailed pictures of the body’s organs, bones and tissues. It lets doctors see how JIA may be affecting the soft tissues of the joint, and is especially useful for joints that are hard to examine physically, like the hip.

    But remember: As a parent, you also have a vital part to play in the diagnostic process. When you first meet with your child’s rheumatologist, it’s helpful to bring a list that includes detailed descriptions of your child’s symptoms, any medical problems your child has had or that run in your family, and any medications or supplements your child is taking.

    After we complete all necessary tests, our experts meet to review and discuss what they have learned about your child's condition. Then we will meet with you and your family to discuss the results and outline the best treatment options.

    When to seek medical advice

    If your child has stiffness or swelling in her joints for more than a few weeks -- with or without fever -- it could be a sign of juvenile idiopathic arthritis. You should make an appointment right away with your child’s pediatrician, who will then make a referral to a rheumatologist if JIA is suspected.

    A parent’s perspective
    Our son, Jack, had just turned 1 and needed your services for an issue he was having with his hip. During our few visits to Boston Children's Hospital, my wife and I were exposed to a whole new world. Read about a family’s experience here at Children’s.
  • At Boston 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 is methotrexate, 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.

    Alternative medicine

    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.

    At-home remedies

    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
    • accommodations
    • navigating the hospital experience
    • resources that are available for your family
    Center for Young Women's Health and Center for Young Men's Health

    Why are my friendships changing?  How can I convince my parents that being a vegetarian is heathy and right for me? What types of birth control are available to me, and how do I use them? Young men and young women may have some concerns specific to their gender, and some that they share. At Children's, the Center for Young Women's Health  and Center for Young Men's Health offer the latest general and gender-specific information about issues including fitness and nutrition, sexuality and health, health and development and emotional health.

  • Research & Innovation

    Even as researchers are working to discover the cause of juvenile idiopathic arthritis, progress in treating JIA is moving faster than ever. Just a few decades ago, doctors could do little to actually change the course of the disease: While aspirin could ease the symptoms or steroids could tamp down inflammation (with often-risky side effects), there wasn’t much by way of a long-term solution. Today, however, there are many more therapies -- with fewer side effects -- to effectively control inflammation and avoid the consequences of this once-devastating disease.

    Children’s Hospital Boston physicians are helping pioneer some of the most promising new treatments for JIA, including the use of biologics, protein-based drugs made from living cells cultured in a lab. In arthritis, the immune system is mistakenly attacking healthy tissue (in this case, the lining of the joints). Many medications therefore work to slow down -- suppress -- the whole immune system. But a biologic drug is different, because it targets specific parts of the immune system in order to “block” their role in causing joint inflammation.

    Children’s rheumatologist Peter Nigrovic, MD, recently took a closer look at one of these biologics, anakinra. Anakinra is one of a group of biologics that target interleukin-1, a kind of “messenger molecule” that carries information from one group of immune cells to another. In a report that drew on data from 11 treatment centers worldwide, Nigrovic and his colleagues examined how well anakinra worked for children with the most serious form of JIA, called systemic JIA. Among the highlights:

    • 22 percent of the children received only anakinra.
    • Of the others, 67 percent also received corticosteroids and 33 percent received additional disease-modifying anti-rheumatic drugs (DMARDs).
    • At the time of follow-up, about 90 percent of all children had seen their arthritis go into remission.
    • Among those who had full remission were 80 percent of the children who received only anakinra.

    The report suggests that with further study, interleukin-1 blockers like anakinra could prove to be a powerful first line of defense against systemic JIA.

    Clinical trials and patient registries

    There are many ways in which your child might benefit from Children’s Hospital Boston’s medical research program. Children’s doctors and scientists have made many breakthrough discoveries about diseases like polio and leukemia; our ongoing research continues to push the boundaries of the way pediatric medicine is practiced.

    It’s possible that your child will be eligible to participate in one of Children’s current clinical trials. These studies are useful for a multitude of reasons: Some trials are designed to evaluate the effectiveness of a particular drug, treatment or therapy on a specific disease; others help doctors to better understand how and why certain conditions occur. At any given time, Children’s has hundreds of clinical trials under way.

    Alternately, your child’s doctor might ask you to participate in a registry, a list of patients with JIA that is matched to an archive of biospecimens (such as serum and DNA) to serve as a resource for research into this disease.

    And participation in any clinical trial or registry is completely voluntary: We will take care to fully explain all elements of the treatment plan prior to the start of the trial, and you may remove your child from the medical study at any time.

    Search current and upcoming clinical trials at Children’s.                                             

    Search the NIH’s list of clinical trials taking place around the world.

    Clinical and Translational Study Unit
    Read about a day in the life of the Clinical and Translational Study Unit at Children’s.
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