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Diagnosis & Treatment of Your Child's Juvenile Arthritis

Online Health Chat with Dr. Steven Spalding and Dr. Andrew Zeft

October 21, 2011


Introduction

Cleveland_Clinic_Host: Juvenile arthritis (JA) is a chronic disease that typically affects joints, but can also involve the eyes, skin, and gastrointestinal tract. Of the many autoimmune and inflammatory conditions that can develop in children, juvenile idiopathic arthritis (JIA) is the most common. JIA affects about 1 in 1,000 children, or roughly 300,000 children in the United States.

If you are the parent of a child with juvenile arthritis, you want them to receive the most comprehensive diagnosis, treatment, and follow-up care. The Center for Pediatric Rheumatology at Cleveland Clinic Children’s Hospital provides this complete spectrum of care for children and adolescents who present with arthritis and a wide range of related disorders, including acute or chronic limp, joint swelling, or evidence of an autoimmune disease. A wide range of specialized, multidisciplinary pediatric services are available to the child and family with a rheumatic disorder, including nursing, physical and occupational therapy, orthotics, pediatric ophthalmology, and orthopaedics. Expert consultations are also readily available in pediatric radiology, gastroenterology, pulmonology, neurology, nephrology, cardiology, and other sub-specialty services. Children requiring inpatient rehabilitation services can be treated at the nationally recognized Cleveland Clinic Children's Hospital for Rehabilitation.

Cleveland Clinic is a regional, national, and international resource, and is regularly ranked among the top five hospitals in the United States by US News & World Report. In addition, the Department of Rheumatic and Immunologic Diseases is also rated among the two best programs in Rheumatology in the U.S.

In addition to providing pediatric patients with quality family-centered care, we also offer rheumatology care for children and adolescents outside of the country. Our International Center regularly arranges visas, travel, and accommodations for families who require extensive outpatient evaluations and/or inpatient management.

Steven Spalding, MD, has a dual appointment in the Department of Rheumatic and Immunologic Disease and in the Section for Pediatric Medical Subspecialties. He is also a member of the Center for Vasculitis Care and Research. Dr. Spalding earned his medical degree from Wright State University School of Medicine in Dayton, Ohio, and completed his pediatric residency and pediatric rheumatology fellowship at Children's Hospital of Pittsburgh in Pittsburgh, Pennsylvania. He is certified by the American Board of Pediatrics in general pediatrics and pediatric rheumatology.

Dr. Spalding’s current research involves examining the effect of age on presentation and treatment of periodic fever, aphthous stomatitis, pharyngitis, and adenopathy (PFAPA) syndrome, as well as the manifestations and treatment of airway disease in pediatric Wegener's granulomatosis. Dr. Spalding is also involved in several national clinical trials involving juvenile idiopathic arthritis (JIA) and recurrent fever syndromes. His clinical interests include pediatric vasculitis, recurrent fever syndromes, treatment of JIA, and treatment of pediatric uveitis.

Andrew Zeft, MD, also has a dual appointment in the Department of Rheumatic and Immunologic Disease and in the Section for Pediatric Medical Subspecialties. He earned his medical degree from the Medical College of Wisconsin in Milwaukee and completed his pediatric residency at Tulane University Hospital & Clinics in New Orleans. He completed his pediatric rheumatology fellowship at Children’s Hospital & Regional Medical Center in Seattle and is certified by the American Board of Pediatrics in general pediatrics and pediatric rheumatology.

Dr. Zeft has presented, published, and participated in research on a variety of pediatric rheumatology subjects, including JIA and Wegener’s granulomatosis in childhood. His clinical interests include juvenile dermatomyositis, vasculitis, juvenile rheumatoid arthritis, localized scleroderma, systemic lupus erythematosus, and other rheumatologic conditions that affect children.

Cleveland_Clinic_Host: To make an appointment with Dr. Spalding, Dr. Zeft, or any of the specialists at Cleveland Clinic Children's Hospital, please call 216.444.KIDS (5437) or visit us online at clevelandclinicchildrens.org.

Cleveland_Clinic_Host: Welcome to our Online Health Chat with Steven Spalding, MD, and Andrew Zeft, MD. We are thrilled to have them here today for this chat. Let’s begin with some of your questions.


Needs to know

mom123: I'm looking for information about JRA (juvenile rheumatoid arthritis). My oldest child is showing signs of JRA. He is very grumpy upon waking, and he has some growths on his elbow area, his heel, and his hand/finger. From my research, it seems that the lump might actually be a rheumatoid nodule, but I'm not sure.

Dr__Steven_Spalding: Mornings are usually the worst time of day for children with arthritis. While they are sleeping, proteins formed as the result of inflammation in their joints 'gel' together, making it hard to move their joints. Children with active arthritis may have 30 or 60 minutes, or even several hours of morning stiffness. However, with appropriate therapy, the duration and severity of this morning stiffness can be significantly improved. In regard to the nodules you have noticed, you are correct that they can be due to the arthritis. When present, these nodules usually indicate a more severe and aggressive form of juvenile arthritis.


Causes

curious987: What causes juvenile arthritis? How common is the disease?

Dr__Steven_Spalding: Juvenile arthritis is one of the most common chronic diseases in children behind asthma, obesity, ADHD and autism, and inflammatory bowel disease. There are roughly 300,000 children in the United States with juvenile arthritis, making it more common than type 1 diabetes or any childhood cancer. At the Center for Pediatric Rheumatology at Cleveland Clinic, we care for more than 250 children and young adults with arthritis.

Dr__Steven_Spalding: The causes of JRA are not entirely clear, but researchers have determined there are certain genetic and environmental factors that may increase a child's risk for arthritis. Our group is one of five sites working with the National Institutes of Health on a large study to validate the genetic risk factors possibly associated with JIA (juvenile idiopathic arthritis).

Guilia_R: Are there any known risk factors for juvenile arthritis?

Dr__Steven_Spalding: Researchers are focusing on identifying genetic and environmental factors that may increase a child's risk for developing JIA. This research is still in the early phases but is critical to understanding the cause and eventually developing a cure for juvenile arthritis.

silverpine: Are there certain triggers (like there are for asthma) that cause relapses?

Dr__Steven_Spalding: We do not fully understand what triggers relapses or flares of JIA. There are believed to be environmental factors that contribute to developing JIA, but these are poorly understood. There are certain infections that are known to trigger acute arthritis symptoms not fulfilling diagnostic criteria for JIA. Cigarette smoke is understood to heighten disease activity in adults with rheumatoid arthritis, so it may also contribute to disease activity in JIA. A small percentage of children with JIA actually have the subtype that is identical to rheumatoid arthritis. Investigation is underway concerning whether heightened airborne pollution may contribute to flares of the JIA subtype, systemic-onset JIA.


New Diagnosis

sweetgrl22: We just found out that my 9-year-old daughter has juvenile arthritis. We have not seen a specialist. What can we expect from the first visit and the start of treatment?

Dr__Steven_Spalding: The first visit with a pediatric rheumatologist usually lasts 60 to 90 minutes. The rheumatologist will ask you and your child for a detailed history and will perform a thorough physical examination. Following the interview and exam, the doctor will share his or her findings and recommendations with you. There will also be discussion regarding options for further investigation (blood work, X-rays, MRIs, eye exams, etc.) and treatment. We encourage our patients to ask as many questions as needed to feel comfortable with the diagnosis and recommendations. We also instruct many families to go home and think about our conversation before making any decisions. It is critical that families have the time and support they need to make decisions regarding their child's arthritis care.


Symptoms

NAH421: My 8-year-old son was diagnosed with JRA. This past Tuesday was so bad that he couldn't even walk. He is doing better now, but from what I read, this will be an ongoing challenge. Any initial advice/guidance would be appreciated as my wife and I learn how to support our son through this.

Dr__Andrew_Zeft: It sounds like your son had a short-lived flare of his arthritis. Our goal with treatment is to minimize or hopefully eliminate the number of flares a patient has. While intermittent episodes of joint pain are common, severe episodes where a child's ability to function is significantly impaired is concerning and might require a change in his therapy.

twinklestar9: I have a question about shortness of breath. My son, who has JRA, has had it for a while, and I keep forgetting to talk to his doctor about it. When my son tries to run, he gets very short of breath and says he has trouble breathing, and it really scares him. He came home from baseball practice the other day in tears because the coach had them run and he got really short of breath. I'm planning to make an appointment with his pediatrician about this. I wasn't sure if it could be related to JRA or if it might be something else.

Dr__Steven_Spalding: When children with JRA experience new or different symptoms, it is always important to consider whether their symptom is related to their arthritis. Shortness of breath has a variety of causes, including asthma, heartburn, or even anxiety. Shortness of breath is hardly ever due to a child's arthritis, with two exceptions: 1) they have systemic-onset arthritis, which can cause inflammation of the lung lining or 2) they are on prednisone, which can cause heartburn. We would encourage you to speak with your pediatrician about these symptoms.

lucyintheskies: Are there other immunologic diseases in children that can mimic the symptoms of JRA?

Dr__Andrew_Zeft: There are other chronic inflammatory diseases and also immune deficiencies of childhood that have arthritis as a feature, so they can present like JIA. Inflammatory bowel disease (e.g., Crohn's disease) is an example in which patients can have only mild gastrointestinal complaints and have arthritis more prominently as a presentation. Less common immune deficiencies, such as common variable immune deficiency (CVID) or x-linked agammaglobulinemia, can present with arthritis. Usually, patients with primary immune deficiency have had more frequent or atypical infections in their history.


Types

gina_t: My 7-year-old daughter was just diagnosed with pauciarticular JRA. I've been warned of her risk of uveitis. So far she shows no symptoms. Is there anything we should be doing to prevent this? Special diet? Exercise program?

Dr__Steven_Spalding: Uveitis is a serious complication of JRA. Children should have regular slit lamp examinations by ophthalmologists to screen for uveitis. The frequency of these slit lamp examinations depends on the type of arthritis, duration of disease, patient age, and status of their antinuclear antibody testing (ANA). The risk of developing uveitis is greatest for the first four years following a diagnosis of JRA. Other than diligent screening, there is no way to prevent uveitis.

Collie: What is systemic arthritis and can it be avoided?

Dr__Steven_Spalding: Systemic arthritis is one of the more rare subtypes of juvenile arthritis and accounts for roughly 10 percent to 20 percent of children with juvenile arthritis. Children with systemic arthritis suffer from almost daily fevers higher than 101 F, which are accompanied by short-lived light red/pink rashes located under their arms, on their trunk, or on the inner surface of their thighs. These children may also have enlarged lymph nodes (glands in the neck, armpits, and groin), liver, or spleen. They may also experience arthritis, typically in the knees, ankles, or wrists. At the current time there is no way to prevent systemic arthritis.


Treatment

haleys_mom: Can you tell us about the nonsurgical treatment options for juvenile rheumatoid arthritis?

Dr__Steven_Spalding: There are many nonsurgical treatments for juvenile arthritis. In fact, surgery is typically a therapy of last resort for our patients. Broadly speaking, nonsurgical therapies include medications that act to reduce pain, medications that act on the immune system to reduce inflammation, and supportive interventions such as physical or occupational therapy. It is important to remember that abnormalities in the immune system cause arthritis symptoms in children, so definitive therapy requires the use of medications that target the immune system.

HSmith77: We're in the early stages of my child's JRA diagnosis. I still have so many questions, especially around treatment and recovery. Can you help me understand the different treatment options? What types of medication will my son be on, and will he be on drugs for the rest of his life?

Dr__Andrew_Zeft: It partly depends on the subtype of JIA your child has. Typically, JIA treatment involves an initial induction phase, when medications are used to make the active arthritis disease inactive (on medication). After a period of disease inactivity, while on medication(s), then there is an attempt to lesson medication use, hoping that the disease will remain inactive or, in a sense, be in remission. Different subtypes of JIA and different individual patients require more or less medication doses and duration to achieve inactive disease.

jesse: Can you please discuss stem cell transplant as treatment?

Dr__Andrew_Zeft: Stem cell transplant is not standard treatment for children with juvenile idiopathic arthritis (JIA), but has been performed more commonly in patients with severe forms of the JIA subtype systemic-onset JIA, or polyarticular JIA. Protocols for autologous stem cell transplant in children are becoming more refined in these settings as more is learned about the appropriate protocols to be used, which are safer and more effective. Treatment is always based on the best risk-benefit ratio for the patient, so stem cell therapy is reserved typically for patients who remain steroid dependent and whose disease remains active despite other more conventional therapies. We are involved in a national consortium of pediatric physicians who evaluate and treat children with diseases other than oncologic diagnosis that require bone marrow transplant.


Medications

hippiemom: My daughter just turned 4. She is on nabumetone at the present time. At first, it seemed the medication was working. Unfortunately, it hasn't had the effect we had hoped for. Now our doctor has recommended Humira® injections. What are the long-term effects these medications have on children? Also, are there any natural or organic alternatives that may helpful?

Dr__Andrew_Zeft: Nabumetone belongs to a class of medications called nonsteroidal anti-inflammatory drugs (NSAIDS). These NSAIDs offer about a 30 percent improvement in pain levels, but fail to fundamentally act on the immune system to stop the inflammatory process, which leads to arthritis. Current treatment recommendations for juvenile arthritis incorporate these NSAIDs for pain control, but more directed therapies, such as methotrexate are advised. A drug such as Humira® (adalimumab) is typically reserved for those patients who have failed to improve on other medications including methotrexate, leflunomide (Arava©), or sulfasalazine.

payday: My daughter has been on Actemra® for about six months now. She has problems with hives and itching. What causes this and what can we do to help it?

Dr__Steven_Spalding: Thus far, Actemra® (tocilizumab) is used to treat children with systemic-onset JIA. Hives and itching may be seen in children who have active systemic JIA. However, children receiving Actemra® may also experience hives and itching during or immediately following their infusion. In this scenario, their symptoms are likely a low-grade allergic reaction to Actemra®. Use of medications such as steroids, Benadryl®, and Tylenol® prior to the Actemra® infusions may help prevent or decrease the severity of these symptoms.


Pain

a_grade: My son is on naproxen, but is still in pain. What else can be done to help reduce his pain?

Dr__Steven_Spalding: Pain in JRA is a common complaint but might not always be related to a child's JRA. If pain is related to certain activities, then an assessment and treatment by a physical therapist may be necessary. Children with JRA may also suffer from sleep disturbances, anxiety, or depression, which may manifest as complaints of pain. Our approach is to first determine if a child's pain is due to active arthritis using imaging tests such as MRI or ultrasound. If there are no signs of active arthritis, then we will refer families to a specialized multidisciplinary team consisting of physical therapists, pain medicine physicians, sleep medicine doctors, and psychologists to help families reduce their child's pain.


Specialists

MSN2219: Our pediatrician feels that our 13-year-old daughter should see a pediatric rheumatologist, but we do not know where to begin. Do you see many patients from out of state? Is this a situation where you would see her one-two times and then the pediatrician would manage, or will she need to always have her care coordinated by a rheumatologist, even as she gets older?

Dr__Steven_Spalding: There is a national shortage of pediatric rheumatologists. In fact, 13 states have no access to a pediatric rheumatologist. At Cleveland Clinic, we see a large number of patients with juvenile arthritis for second and third opinions. Since 2008, our pediatric rheumatologists have seen almost 300 children from 34 states and 10 countries for second opinions regarding their autoimmune disease. We make great efforts to continue to support these families after they leave our clinic and provide them with world-class care.


General Questions

ohohoh: Are there support groups for children who have been diagnosed with arthritis as teens? My daughter is having a very hard time.

Dr__Steven_Spalding: The Arthritis Foundation has a wonderful Web site (arthritis.org) designed to support children and families with arthritis. At our center, we offer patients and families the opportunity to participate in Shared Medical Appointments (SMAs). At these SMAs, six to eight children with JRA and their families sit down together for an educational session, activity, and an individual visit with a health care provider. These sessions last two hours. Families and patients have told us how much they enjoy the support they receive from the other participants in these SMAs.


Closing

Cleveland_Clinic_Host: I'm sorry to say that our time with Dr. Spalding and Dr. Zeft is now over. Thank you again Dr. Spalding and Dr. Zeft for taking the time to answer our questions today about the treatment and management of juvenile arthritis.


More Information

Cleveland_Clinic_Host: To make an appointment with Dr. Spalding, Dr. Zeft, or any of the specialists at Cleveland Clinic Children's Hospital, please call 216.444.KIDS (5437) or visit us online at clevelandclinicchildrens.org.

A remote second opinion may also be requested from Cleveland Clinic through the secure eCleveland Clinic MyConsult Web site. To request a remote second opinion, visit www.eclevelandclinic.org/myConsult.

If you need more information, click here to contact us, chat online or call the Center for Consumer Health Information at 216.444.3771 or toll-free at 800.223.2272 ext. 43771 to speak with a Health Educator. We would be happy to help you. Let us know if you want us to let you know about future web chat events!

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This chat occurred on 10.21.2011

This information is provided by the Cleveland Clinic and is not intended to replace the medical advice of your doctor or health care provider. Please consult your health care provider for advice about a specific medical condition. ©Copyright 1995-2011 The Cleveland Clinic Foundation. All rights reserved.