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Unique Challenges of Juvenile Arthritis


Arthritis is not just a disease affecting the senior population. As many as 1 in 1,000 kids are diagnosed with a form of Juvenile Arthritis. (Arthritis Foundation, retrieved Sept. 2018) Life for these kids has the potential to be as enjoyable as that of other kid's once they receive the appropriate medical care. However, the road to accurate diagnosis can be tricky and many symptoms have to be tracked for an appropriate amount of time. Furthermore, staying consistent with the prescribed treatment plan presents unique challenges for kids and parents. Below you will find a comprehensive look at Juvenile Arthritis as wells as resources and strategies for overcoming its challenges.

Battle Against Inflammation

Similar to chronic disease in adult populations, the major of forms of Juvenile Arthritis begin and end with inflammation. Although the medical community has a few suggestions of what might be the trigger for the blast of symptoms, the precise trigger for the inflammatory response is hard to identify. The actual manifestation of symptoms may differ from patient to patient, though, and results in a variety of potential diagnoses. Therefore, "JA is an umbrella term used to describe ... many autoimmune and inflammatory conditions". (Arthritis Foundation, retrieved Sept. 2018) With almost 300,000 children affected by this chronic inflammatory response in the United States today, it is a much more common occurrence than we might expect.(Arthritis Foundation, retrieved Sept. 2018)

This is why, "Juvenile Arthritis is [called] an autoimmune disease... Arthritis results from ongoing joint inflammation in four steps: Whether from a genetic predisposition or not, the immune system begins to attack a part or many parts of the child's body and does not quit on its own. The major risk is permanent damage done to the body part, and, as children are still forming these body parts, there is greater risk for deformity if the inflammatory response is not curbed.

  1. The joint becomes inflamed

  2. The joint stiffens (contracture)

  3. The joint suffers damage

  4. The joint's growth is changed

In some cases, symptoms of juvenile arthritis are mild and do not progress to more severe joint disease and deformities. In severe cases, juvenile arthritis can produce serious joint and tissue damage. It can also cause problems with bone development and growth." (American Academy of Orthopaedic Surgeons, Sept. 2018)

Major Variations of JA

As previously stated, Juvenile Arthritis does not manifest the same symptoms in each patient. Our current level of research suggests that genetic variation could be responsible for the variety of presentations of inflammation in the body. However, categories, or diagnoses, have been identified due to differing symptom manifestations and patterns of disease behavior. At times, especially children, will go into partial or full remission from symptoms. Therefore, they may become completely symptom free! At other times, the disease process may switch to another part of the body. That is why, for treatment purposes, your doctor may place a higher emphasis on accurate diagnosis than you anticipate. It may lead to more testing than is comfortable or possibly affordable. Yet, by achieving an accurate diagnosis, your doctor hopes to be able to predict more closely how the disease will change and switch over the course of time. Each diagnosis label has patterns of behavior that has been observed across patient populations.

The following is a list of major types of Juvenile Arthritis provided by the Arthritis Foundation.

  • Juvenile idiopathic arthritis (JIA). Considered the most common form of arthritis, JIA includes six subtypes: oligoarthritis, polyarthritis, systemic, enthesitis-related, juvenile psoriatic arthritis or undifferentiated.

  • Juvenile dermatomyositis. An inflammatory disease, juvenile dermatomyositis causes muscle weakness and a skin rash on the eyelids and knuckles.

  • Juvenile lupus. Lupus is an autoimmune disease. The most common form is systemic lupus erythematosus, or SLE. Lupus can affect the joints, skin, kidneys, blood and other areas of the body.

  • Juvenile scleroderma. Scleroderma, which literally means “hard skin,” describes a group of conditions that causes the skin to tighten and harden.

  • Kawasaki disease. This disease causes blood-vessel inflammation that can lead to heart complications.

  • Mixed connective tissue disease. This disease may include features of arthritis, lupus dermatomyositis and scleroderma, and is associated with very high levels of a particular antinuclear antibody called anti-RNP.

  • Fibromyalgia. This chronic pain syndrome is an arthritis-related condition, which can cause stiffness and aching, along with fatigue, disrupted sleep and other symptoms. More common in girls, fibromyalgia is seldom diagnosed before puberty.

(Arthritis Foundation, retrieved Sept. 2018)

Diagnosis

Finding and accurate diagnosis is the first step, however, depending on the severity, and consistency of your child's symptoms, this first step may take some time. Most likely, until enough data is accrued, your child's doctor will treat symptoms individually. Yet, this alone, may not be enough to deter the disease process; therefore, it is a preliminary treatment until a more definitive course of action can be taken. According to WebMD, "... because some of the symptoms can be associated with other diseases, a diagnosis may be difficult. Because there is no actual test for juvenile arthritis, the diagnosis is made by excluding other conditions that may cause similar symptoms, such as bone disorders or breaks, fibromyalgia, infection, Lyme disease, lupus, or cancer." (WebMD, retrieved Sept. 2018)

WebMD also provides a list of common diagnostic tests:

  • Complete blood count (white cells, red cells, and platelets)

  • Lab tests on blood or urine

  • X-rays (to rule out breaks or damage to bones)​

  • Imaging tests, such as magnetic resonance imaging (MRI) scans​

  • Blood culture to check for bacteria, which could indicate an infection in the bloodstream​

  • Tests for viruses​

  • Tests for Lyme disease​

  • Bone marrow exam, which is used to check for leukemia​

  • Erythrocyte sedimentation rate to see how quickly the red blood cells fall to the bottom of a test tube (The rate is faster in most people who have a disease that causes inflammation.)​

  • Test for rheumatoid factor, an antibody that may be found in people with arthritis (An abnormal result is more common in adults than in children.)​

  • Antinuclear antibody test to show evidence of autoimmunity (Autoimmunity is a disease state in which the body's defense system, the immune system, malfunctions and attacks the body itself. This test is also useful in predicting if eye disease will develop in children with juvenile arthritis.)​

  • Bone scan to detect changes in bones and joints (This test may be ordered if the symptoms include unexplained pain in the joints and bone.)​

  • Joint fluid sampling and synovial tissue sampling, which might be performed by an orthopedic surgeon

(WebMD, Sept. 2018)

Treatment Professionals for JA

Building your child's treatment team is foundational to receiving the best care possible. While some providers may be limited in areas, it is important to find providers that are experienced practitioners in the field of Rheumatology. In addition to this, you will include your child's general pediatrician, therapists, and, of course, yourself. It is important to remember that you are an important member of your child's treatment team. You observe more symptoms, more side-affects, more benefits of prescribed medications and treatments. You provide valuable information to the rest of the team that is impossible to get without you.

Depending on the specific needs of your child, your treatment team may extend beyond the doctor's office. "The core team may consist of a pediatric rheumatologist, physical and occupational therapist, social worker, and nurse specialist. This core team can coordinate care with a child's pediatrician, adult rheumatologists, other physicians (such as an ophthalmologist or orthopedic surgeon), and other health professionals (dentist, nutritionist or psychologist) as well as reach out to schools and additional community resources to ensure that the child receives the best care possible." (American College of Rheumatology, Sept. 2018) All of these care providers collectively make up your child's treatment team, and a team operates best with consistent accurate communication.

Treatment

Sometimes treatment for a chronic illness is not much fun. From physical therapy exercises to side-affects from medications, there are reasons why it can be difficult for kids and parents to consistently adhere to treatment procedures for Juvenile Arthritis. However, following the prescribed treatments is the recommended way to protect the body from permanent damage. "The goal of treatment is to relieve inflammation, control pain and improve the child’s quality of life. Most treatment plans involve a combination of medication, physical activity, eye care and healthy eating." (Arthritis Foundation, retrieved Sept. 2018)

These are the major types of medication commonly prescribed:

  • Non-steroidal anti-inflammatory drugs (NSAIDs) are often the first type of medication recommended. These are usually ibuprofen or naproxen and are used primarily to reduce inflammation and relieve pain. NSAIDs will help calm down the disease.

  • Disease-modifying anti-rheumatic drugs (DMARDs) are the next step if NSAIDs do not relieve symptoms. DMARDs slow or stop progression of juvenile arthritis, but may take weeks or months to relieve symptoms. The most commonly used drug is methotrexate. Azulfidine is occasionally prescribed. Your doctor may want your child to take disease-modifying anti-rheumatic drugs along with nonsteroidal anti-inflammatory drugs.

  • Biologic agents are a new class of drugs that also slow or stop the progression of the disease. These are usually only used if the disease-modifying anti-rheumatic drugs do not seem to work or if the patient has arthritis of the sacroiliac joint.

  • Corticosteroids are stronger medications that may be used in treating severe juvenile arthritis. Given by mouth (orally) or injected into a vein (intravenously), corticosteroids can reduce serious symptoms, such as inflammation of the sac around the heart. If only one or two joints are involved, corticosteroids may be injected directly into the joint. Corticosteroids, however, can cause unwanted side effects, such as interfering with a child's growth, weight gain, weakened bones, and increased susceptibility to infections. It is important to follow the doctor's instructions exactly when taking corticosteroids.

In addition to medication, your child's doctor may refer you to physical therapists, occupational therapists, and counseling therapists to assist in your child's overall treatment. These professionals are experienced in addressing a specific treatment outcome with various exercise methods. For example, physical therapists design exercises for gross motor movement- maintaining a fitness level necessary for walking, carrying items, and getting in and out of seated positions. Occupational therapists focus more on fine-motor movements necessary to write, type, tie shoe-laces, etc. According to the American College of Rheumatology, "Physical and occupational therapy can increase joint motion, reduce pain, improve function, and increase strength and endurance. Therapists may construct splints to prevent permanent joint tightening or deformities, and work with school-based therapists to address issues at school." (American College of Rheumatology, Sept. 2018) Furthermore, it cannot be overstated how challenging it can be socially and emotionally for children with Juvenile Arthritis. A qualified counseling therapist can be a major asset to them in processing these challenges and providing strategies for them to handle the psychological pressure. The Arthritis Foundation states that, "Self care also involves helping the child address the emotional and social effects of the disease." (Arthritis Foundation, retrieved Sept. 2018)

Strategies for Overcoming Obstacles

There are many different specific obstacles to maintaining consistency in the treatment plan. However, good note taking and organization can relieve much of the pressure. Whether it's forgetting to take a medication or feeling like the dosage needs to change, if you keep some kind of log you will have something to show the doctor the next time you have an office visit. Make good use of checklists and calendars to help you stay on top of multiple treatments. Sometimes medications take time to show an effect. Keeping a post-it note in your log about the specifics of each medication can help remind you and your child of each medications "personality". Furthermore, in addition to efficacy, some medications cause side-effects. Managing side-effects is also easier with a log.

The Arthritis Foundation recommends a few tips for managing treatment. "Take notes at appointments so you know changes in medication, when to schedule a test or how to do an exercise. Put the pills in a hard-to-miss spot, maybe on the kitchen counter or on the bathroom sink next to your child’s toothbrush. Have your child take pills at the same times every day, after breakfast or after dinner, so it becomes routine. And, administer injections the same time each week, as the doctor prescribes. When possible, keep all the medications together so you’re not searching for anything." (Kidsgetarthritistoo.org, Sept. 2018) With accurate diagnosis, appropriate and consistent treatment, it is the expectation that children with Juvenile Arthritis can have a happy childhood and participate in many of the same activities as their peers. With a managed disease process their bodies can grow and develop without permanent damage.

Sources:

Arthritis Foundation, Juvenile Arthritis

American College of Rheumatology, Juvenile Arthritis

American Academy of Orthopaedic Surgeons, Juvenile Arthritis Types and Treatments

MedlinePlus, Juvenile Arthritis

Arthritis Foundation: Kids Get Arthritis Too, Treatment Plan Adherence for Your Child with JA.

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