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Childhood arthritis

What is childhood arthritis (CA)?  

Many people mistakenly think arthritis is just a disease of the elderly, but the statistics tell a different story. About three in 1,000 Canadian children has childhood arthritis (CA), which makes it more common than most chronic childhood diseases. You may have heard of the medical term “juvenile idiopathic arthritis” and wondered what it means. “Idiopathic” simply means “unknown”. This word is used when other illnesses known to cause arthritis have been ruled out as the cause of a child’s arthritis.

FAQs

How is CA diagnosed? 

Children with arthritis do not always complain of pain, so it may be difficult to tell if a child’s joints are inflamed (red, swollen and warm to the touch). Sometimes the only initial clues to arthritis may be that the child is stiff when waking up or there is some difficulty using an arm or leg. In some cases, there may be no signs other than a swollen joint or some loss of movement. As a result, CA can be difficult to detect and may go unrecognized by even the most experienced physician. Your child’s doctor will look carefully for any signs of joint swelling or loss of mobility, which indicate that the joints are inflamed.  

Arthritis or its symptoms may be a result of many different illnesses, including infection, injury, allergic/drug reactions or other autoimmune diseases (such as thyroid disease, diabetes, inflammatory bowel disease or lupus). Since there is no single test to diagnose CA, tests to rule out other causes of joint pain and swelling must be done. Your child will likely have X-rays as well as urine and blood tests.  

Once the diagnosis of CA has been confirmed, routine tests (such as blood tests, X-rays and eye examinations) will need to be repeated from time to time in order to follow the illness and assess the effects of any medication. Your child’s doctor will discuss with you how often these routine tests need to be done. 

What are the patterns and forms of CA? 

The symptoms and nature of CA vary greatly. Once a doctor suspects CA, your child will usually be referred to a specialist, such as a pediatric rheumatologist (a doctor who is specially trained in the diagnosis, evaluation and treatment of disorders of joints, muscles and bones in children).  

There are seven major types of CA:

  • Oligoarticular–persistent JA  
  • Oligoarticular–extended JA  
  • Polyarticular–RF negative JA  
  • Polyarticular–RF positive JA  
  • Systemic JA  
  • Enthesitis–related arthritis  
  • Psoriatic arthritis  

Determining the form of CA your child has is mostly based on the information collected during the initial physical examination and tests. What happens with your child’s disease over the next six to 12 months is also important. It may take time for your child’s doctor to be absolutely certain which of these types of CA your child has. If the course of your child’s disease changes, a different, more appropriate form may be assigned. Your child’s health-care provider can still begin treatment without knowing exactly what form of CA your child has.  But confirmation of the form of CA will give you, your child and his or her health-care providers the best information for creating a specially designed treatment plan. 

Oligoarticular-Persistent Juvenile Arthritis 

This is the most common and mildest form of CA. Children are classified as having oligoarticular-persistent JA if no more than four joints are involved beyond six months after the diagnosis of CA. Although multiple joints are affected, not all joints may be inflamed at the same time. The most commonly affected joints are the knee, ankle, wrist and elbow, with little to no change in the overall health or growth of the child. Symptoms usually start in children four years old or younger, and girls are affected more often than boys.

Although oligoarticular-persistent JA may involve flares (when symptoms worsen) and remissions (when symptoms decrease or disappear), with the right treatment there is rarely permanent damage to the joints. Although the joint inflammation in this type of arthritis may be mild, up to 20% of children with this type of CA will develop uveitis (inflammation of the eye), so it is crucial that your child’s eyes are examined at least three or four times a year for the first few years after diagnosis. The blood test for antinuclear antibody (ANA) is almost always positive with children who develop eye inflammation with CA. That’s why the ANA blood test helps identify those children who will need more frequent eye checks. 

Oligoarticular–Extended Juvenile Arthritis 

Children are classified as having oligoarticular–extended JA if four or fewer joints are involved within the first six months after the initial diagnosis, but the child develops arthritis in five or more different joints at any time during the course of the disease. Large and small joints may be affected, and flares and remissions may occur. With the appropriate treatment, permanent damage to the joints can usually be prevented. Eye disease is often seen so it is important for children to have their eyes examined at least three or four times a year for the first few years after diagnosis. The blood test for antinuclear antibody (ANA) helps to identify those children who will need more frequent eye checks. 

Polyarticular–Rheumatoid Factor Negative Juvenile Arthritis 

Children with polyarticular-RF negative JA have five or more joints involved within the first six months of diagnosis, but they do not test positive for rheumatoid factor (RF).This type of CA can begin at any age, and is more common in girls than in boys. It usually starts in several joints at the same time but may begin in only one or two joints and then later involve other joints. The joints of the jaw may be affected and this can lead to a reduced ability of the child to open their mouths or chew, and may cause abnormal growth of the jaw. The joints of the neck may also be affected. Your child’s doctor will check these joints by doing a physical examination and may do X-rays or other tests such as an MRI.  

Polyarticular–Rheumatoid Factor Positive Juvenile Arthritis 

Children with polyarticular-RF positive JA have five or more joints involved within the first six months of diagnosis and test positive for a blood protein called rheumatoid factor (RF). This form of CA can begin at any age, but it occurs more often in girls during their pre-teen or teenage years. Usually, the arthritis starts in several joints at the same time. The onset of this form of CA in teenagers may closely resemble adult rheumatoid arthritis (RA). Occasionally it will begin in only one or two joints, then spreads to involve other joints.  

It can affect both the small (especially hands and fingers) and large (knees, hips, ankles) joints, usually on both sides of the body. Some children may also experience a low-grade fever, rheumatoid nodules (bumps under the skin, especially in the hands or along tendons), anemia (a low red blood cell count or a fall in the hemoglobin level), significant fatigue, poor appetite and an overall feeling of being unwell. Severe joint damage is a concern, so stronger medications are recommended at an early stage.  

Systemic Juvenile Arthritis (Systemic JA) 

This form of CA affects the body in a general way (frequent fevers) and can affect not only the child’s joints and skin, but also the internal organs. Systemic JA can begin at any age and affects boys and girls equally. It often involves many joints, and some joints may be affected to a severe degree. Children have a spiking (rapidly rising and falling) fever that usually occurs once or twice a day. A pale red rash frequently comes and goes with the fever.  

The arthritis usually appears within the first six months after the start of the fever, and can persist even when the fever settles. Children may have swollen lymph glands and an enlarged liver and spleen. They appear listless and unwell during the fever, only to brighten up when their temperature returns to normal. When fever continues on and off for several weeks, the child may become weak, lose weight or become pale from anemia (a fall in the level of hemoglobin in the blood). Flares that last a long time may also interfere with the child’s growth, but growth usually improves as the child’s condition improves. Inflammation of the internal organs may cause stomach pain or affect the heart or lungs, but will not cause permanent damage. Sometimes there is no sign of joint inflammation in the early stages of this form of CA. This can make it very difficult to diagnose, as there are many other illnesses that cause a fever and a rash in children. Because of this, many tests may need to be done.  

The course of systemic JA can be unpredictable. With newer medications, even severe cases may go into remission within a few years; however, flares may occur even after the disease has been inactive for a long time.  

Medications for systemic JA include drugs that control not only the arthritis, but also the systemic part of the illness, such as the fever and the anemia. Inflammation of the eye is uncommon in this form of CA, but children should still have their eyes examined annually. 

Enthesitis–Related Arthritis 

Children with enthesitis-related arthritis have inflammation both in their joints (arthritis) and in the spots where tendons attach or insert to bones (entheses). This form of CA generally affects children over the age of 10 and is more common in boys. This is one of the few types of arthritis that may run in families.  The legs and hips are usually affected, especially around the knees, ankles and bottoms of the feet. Children may complain of knee, heel or foot pain, which may improve with activity. Joint inflammation often continues into adulthood, sometimes progressing into joints in the back and often leading to pain and stiffness. It may also occur with inflammation of the eyes or the bowel (intestines). Many children with this form of CA carry a specific protein in their cells (called HLA B-27) and lab testing for this protein may help in diagnosis. 

Psoriatic Arthritis 

This type of CA is when arthritis accompanied by psoriasis, a skin disease that appears as a scaly red rash. Psoriatic arthritis affects both boys and girls, and it can happen at any age. Often only a few joints are affected, but the hips or back or the fingers and toes can be affected. The fingers or toes of some children may look sausage-like because of extreme swelling. The arthritis starts before any sign of skin disease in about half of children with psoriatic arthritis. For this reason, knowledge of a family history of psoriasis may help with the diagnosis.

What causes CA? 

No one knows exactly what causes CA. It is not caused by any disease or an infection either parent may have had. It is not connected to any event during pregnancy. CA is not caused by eating the wrong foods, and there is no proof that CA can be improved by any specific diets. Many people feel their arthritis is better in warm dry climates, but there is no proof that CA is improved by any particular climate.  

CA may begin after an event that turns on the body’s immune system, such as an ordinary infection or injury. The body’s immune system normally flights these infections or injuries by causing inflammation. With CA, the immune system seems to become overactive and causes continuous inflammation.  This continuous inflammation affects and the joints and sometimes skin and internal organs. 

Most types of CA are not passed from generation to generation so the chance of your child passing arthritis on to his or her own child is extremely rare. 

What are the unique features of CA? 

Growth  

Inflammation from CA affects the growth of a child, meaning the growth patterns of arthritic joints may change. Sometimes infl ammation can lead to quicker growth. However, growth usually returns to normal once the arthritis is under control. Sometimes if the inflammation is not well controlled, growth may slow down.  

If the arthritis is severe and requires medications, such as steroids, overall body growth may slow down. Growth usually returns to normal once the arthritis is controlled and the use of steroids is reduced or stopped. The health-care team will pay careful attention to all aspects of your child’s growth. 

Eye problems and care  

Many types of CA can have inflammation inside the eye (called “uveitis”). This inflammation does not make the eye red, may not be painful or may not affect your child’s vision, so he or she may not even be aware of it. That is why it is important for your child’s eyes to be checked regularly by eye specialists. How often your child needs eye exams will depend on your child’s risk of developing eye problems and will be determined by your child’s health-care team. If your child develops eye inflammation, then your child should be under the care of an eye specialist to receive appropriate treatment. Treatment may include eye drops, injections of steroids behind the eyes and other medications. Undetected or poorly treated eye disease can lead to vision loss or even blindness.  

Eye disease can happen with any type of CA, and eye disease may begin before arthritis is even diagnosed. Eye disease is most common in children with inflammation in one or in only a few of their joints.

Dental care 

Arthritis of the jaw is seen in many children with CA and in all forms.  Your child may have no symptoms, or symptoms are felt as recurrent ear problems rather than arthritis of the jaw. If arthritis severely affects the jaw, the chin may not grow normally and rarely surgery may be required. Parents of children with CA should be aware of jaw problems, and they can occur at any time during their disease. If your child has trouble eating or complains about pain while eating, these symptoms should be reported to your doctor.  

Treatment can include the usual rheumatology medications as well as local treatments such as mouth splints if recommended by an orthodontist. Because the metal in orthodontics braces interfere with MRI scans, please ask your orthodontist about ceramic braces. Different specialists are included in the care of children with arthritis of the jaw. Your child’s dentist should give your child’s teeth special attention and your child should practice good dental care. 

Unpredictability  

Rarely CA can be active for as little as several months up to a year, then  it goes into remission and seems to “disappear” forever. Many children, however, have an up-and-down course for many years, depending on what type of arthritis they have. Flares are those times when the arthritis seems to be getting worse. Remissions are times when the arthritis appears to have disappeared. Sometimes a mild infection, such as the stomach flu, may cause a flare but the reason for a flare is usually unknown. Parents may be upset to see a flare when it seemed the disease had disappeared or greatly improved. Yet parents should remain hopeful and optimistic.

Treatment

Medication

There is no cure for CA. However, currently we have many medications available to treat CA. The healthcare team’s goal is to achieve remission, in other words have no swollen, stiff or painful joints. The good news is that remission is frequently achieved while taking medications. To be fully effective, medication must always be taken regularly and exactly as prescribed. A specific medication program will be designed by your child’s doctor, according to your child’s weight and disease activity. To explore this area of treatment, The Arthritis Society has developed a comprehensive expert guide that delivers detailed information on medications used to treat CA.

EXPLORE: Arthritis Medications – A Reference Guide

Physiotherapy and occupational therapy 

Physiotherapists (PTs) and occupational therapists (OTs) can be important members of your child’s health-care team. Therapists help children maintain their physical abilities and participate in school, sports and recreational activities. Your child’s therapist can help:  

  • Decrease pain and stiffness  
  • Keep muscles strong and flexible  
  • Provide advice about exercise, activity and rest 
  • Discuss ways to protect joints  
  • Provide advice for teachers and coaches about arthritis  
  • Give instruction for the use of splints, orthotics and proper footwear 

Surgery

Surgery is not common, but may be required after many years of severe arthritis. Surgery may be needed to relieve pain, straighten out a bent or deformed joint, restore mobility or to replace a damaged joint. Sometimes the tendons and ligaments around joints, such as the hips, may need to be lengthened. When arthritis affects one knee more than the other, the more affected side may grow faster, temporarily increasing the length of that leg. But this usually improves by itself and surgery is rarely needed.

As CA can affects the neck and jaw, it may make general anesthesia challenging. Eye surgery is sometimes needed if a child develops eye complications due to ongoing or repeated inflammation. Jaw surgery is sometimes needed if a child develops severe growth deformities due to arthritis of the jaw.

Self-Management

Exercise and physical activity 

Exercise is safe and important for a child with arthritis. Therapy exercises, given to your child by a physical or occupational therapist, may be required when your child is first diagnosed with arthritis or when he or she is experiencing a flare. These exercises should be done every day to be effective. When joints are actively inflamed, exercises focus on pain relief and gentle range of motion. Further stretching and strengthening exercises are done when there’s an improvement in the inflammation. Prescribed exercises and regular daily physical activity help:  

  • Keep muscles and bones strong 
  • Keep joints flexible  
  • Reduce pain  
  • Improve confidence and mood  
  • Improve energy and sleep  
  • Improve or maintain your child’s fitness level 
Helpful hints for your child: 
  • Limit activities on days when your child is sore  
  • Avoid high-impact activities (running, jumping, hopping) when joints are swollen or sore 
  • Swimming, walking and bike riding are good alternatives  
  • Participate in sports and activities with friends  

Comfort measures 

When should you use heat? 

Taking a warm shower and using warm packs are great ways to help reduce pain and stiffness. Always use a protective barrier, such as a towel, between the warm pack and the skin. Heat is ideal for:  

  • Relieving pain  
  • Relieving muscle spasms and tightness  
  • Enhancing range of motion  

To avoid making symptoms worse, heat should not be applied to an already inflamed joint. 

When should you use cold? 

Using a commercial cold pack or a homemade one (from crushed ice, ice cubes or a bag of frozen vegetables) can be helpful. Always use a protective barrier, such as a towel, between the cold pack and the skin. Cold is ideal for:  

  • Decreasing swelling  
  • Decreasing pain  
  • Constricting blood flow to an inflamed joint  

For further details on using heat and cold to manage arthritis, speak with your child’s health-care team. 

Splints 

Your child’s occupational therapist or physiotherapist may recommend the use of splints. Splints may be worn during the day or night. Splints are most commonly used for the wrists, knees or in shoes (foot orthotics). Splints are used to:  

  • Reduce pain 
  • Rest or support a swollen or sore joint(s)  
  • Position and stretch a joint  
  • Provide support during activity 

Massage 

Massage or rubbing is another way to help manage pain. Massage can stretch and loosen stiff muscles and help decrease stress. Rubbing a sore joint will help to block the pain signals from reaching the brain.

Here are some ways a child or teenager can use massage: 

  • Get a massage from a massage therapist. While this will help to relax the entire body, it probably is not possible to have this done very often, as your insurance might only provide limited coverage 
  • Rub your child's sore joints 
  • Do self-massage by rubbing the painful areas 
  • Use a back massage device or massage pillow 

Rest 

Children need extra rest when their arthritis is very active, but a child with active inflammation should be encouraged to move around and stretch. Bed rest is not advised, as this leads to stiffness and loss of mobility. A supportive mattress and a single pillow for the neck are best. Children with arthritis are good judges of their abilities and will often limit their activities when they are sore. 

Relief of morning stiffness 

Most children feel stiff when they wake up in the morning or after sitting for long periods of time. There are several ways to help relieve the stiffness your child may experience, including taking a hot bath or shower, using a hot pack or heating pad and doing range-of-motion exercises. And while most children do better with warmth, some children may respond better to cold treatments. 

What Now

Living well with arthritis

There is a lot you can do to take control and actively manage your arthritis. Below we have listed a few resources to help you learn more about actively managing your arthritis to live better.

Flourish

To find health & wellness advice, self-management tips, inspirational stories, and much more.

Explore Flourish

Online Learning

Our online courses are jam-packed with helpful tips and information.  Each course is devoted to a specific issue or symptom linked to arthritis.

Discover Arthritis Courses

Workshops and Webinars

Learn about upcoming educational events and webinars.

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Navigating Through Arthritis

Learn about information and services available.

Navigate through arthritis

Contributors

This information was last updated September 2017, with expert advice from:

Deborah Levy MD, MS, FRCPC
Pediatric Rheumatologist, Hospital for Sick Children
Associate  Professor of Pediatrics, University of Toronto

Marinka Twilt MD, MSCE, PhD
Pediatric Rheumatologist, Alberta Children's Hospital
Assistant Professor, Pediatrics, University of Calgary

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