Everyone knows someone who has been diagnosed with arthritis. Most commonly the people affected are grandmothers, grandfathers, aunts or uncles. Not many people realize their child could be affected by arthritis. There are approximately 300,000 children in the United States who battle with arthritis every day (“Arthritis Foundation” 2). That’s a great deal of children with arthritis. The effects of a child battling arthritis go much deeper than just aches and pains. A child with arthritis may look fine and not seem like they are sick at all. The complications of arthritis go much deeper than what meets the eye. From time to time, children are accused of faking. Children with arthritis often wake in the mornings in great pain, but once they have exercised their joints the children seem fine. Juvenile arthritis is an autoimmune disease. For some unknown reason the child’s own immune system to starts attacking healthy tissues of the joints. The cause of arthritis is still unknown. Juvenile arthritis is often called idiopathic, meaning unknown origin (Smyth 1). The term juvenile rheumatoid arthritis was the prior terminology for all children with arthritis. The terminology has sense been changed to just juvenile or idiopathic arthritis. Scientists have discovered a genetic predisposition link to the HLA-B27 trait but not all people with the trait develop arthritis. Some environmental contributors to arthritis are certain illnesses and injuries. Stress can also contribute to a flare of arthritis (Ellis 5). Again, no one is quite sure why kids get arthritis. Children can show signs of arthritis as young as six months of age. A flare is when the arthritis is causing active inflammation within the child’s body which results in mobility problems and pain. Getting a diagnosis is often difficult and time consuming. A lack of awareness about juvenile arthritis exists. Many times, kids are misdiagnosed or have to suffer tremendous pain before physicians recognize that arthritis is the cause of the suffering. Many types of juvenile arthritis exist, but juvenile arthritis has three main groups children will usually get categorized in. The type of arthritis a child has can sometimes help predict the severity and course the disease will take. Children with arthritis have to be monitored by specialists in pediatric rheumatology and other specialists in the treatment of juvenile arthritis. Doctors like these are often hard to find. Travel is usually required to see a specialist. The treatment consists of four types of medications. The effects of long term use of these medications can take a toll on the child. Some secondary conditions evolve from the onset of arthritis. Some conditions are from the long term use of certain types of medications. Other conditions are just other spin-offs from chronic inflammation heading to other parts of the body. A childhood should be about fun, not stressful travel to doctors’ offices to be pricked and poked on. Chronic pain management can take a toll on everyone connected to the suffering victim. The rigorous schedule of medications and doctors’ appointments really seem too much at times. All of the appointments and treatments are necessary for a child to maintain ground when battling arthritis. Juvenile arthritis is far more than a few aches and pains.
Getting a diagnosis is often the hardest part. Children are usually first treated for a sprain and told to stay off the joint. An arthritic joint needs to move in order to prevent molding. Molding of a joint is when the joint is stuck in a fixed position because of arthritis. Lack of use in an arthritic joint will only worsen the condition of the joint (Lehman 80). Other children are in and out of the hospital with variety of strange rashes and high fevers. A delay in diagnosis causes much more pain and agony for the children. Hard work will be required from the child to regain what arthritis has taken from their joints. A diagnosis can take months or even years. After arthritis is suspected the child is referred to a pediatric rheumatologist. The rheumatologist may not be able to put a name on the type of arthritis the child suffers from because the rheumatologist will need to follow the symptoms for at least six months (Lehman 86). The physicians will take in account what happens within the first six months of onset. Those first symptoms will determine the diagnosis. Arthritis can rear its ugly head in many ways and how it does can help determine what type of arthritis is causing the pain and predict the severity of the disease. Most commonly, arthritis will just be one or two swollen joint with chronic inflammation. These joints are very hot, red, and painful. If the child has four or less joints involved they will be diagnosed with pauciarticular or oligoarticular; both terms mean few joints. “About half of the children have pauciarticular JRA” (Gray 7). The first type of arthritis is the least severe and effects young girls more often than boys. Other times, arthritis hits many joints and hard. The second type of arthritis can cause children to be completely bed ridden. This type is called polyarticular meaning many joints. Arthritis can also start with high spiking fevers over 104 and rashes sometimes without joint involvement. The third type of arthritis is called systemic. Systemic is the most severe of the three. Systemic arthritis not only affects joints but also soft tissues and organs. Rarely, systemic arthritis is fatal. Understanding children do not fit neatly in these categories is important. The arthritis will often change and show symptoms of one or even two other types of arthritis. Juvenile arthritis is very complex and can change. The change does not mean the physician was wrong. Juvenile arthritis just works that way for some children. Every child will respond differently to the disease. The symptoms present within the first few months of diagnosis will determine the diagnosis anything outside of those symptoms are secondary circumstances (Brewer 14). Blood work is done to determine if the pain is arthritis and to rule out other diseases with the same symptoms. No one test determines arthritis, but a combination of history and tests. Blood markers for arthritis include the erythrocyte sediment rate which shows inflammation levels within the body. All children with an arthritic flare have elevated erythrocyte sedimentation rates (ESR). The ANA levels which stands for antinuclear antibody is a definite glitch in the immune system causing an antibody to attack itself. Children with a positive ANA are more at risk for the arthritis to attack their eyes. Child with positive ANA will have to be monitored for inflammation of their eyes (Foster 3). Inflammation of the eyes is not easily detected without an eye exam. If the ANA levels get really high the physician will suspect Lupus-SLE. Lupus-SLE can cause arthritis along with heart problems. Children can go back and forth between the two (Brewer 21). The last blood marker is the RF which is the rheumatoid factor. Yes, some children will have the same rheumatoid arthritis as adults. Arthritis is the number one reason that healthy adults have to quit work and go on disability (“Arthritis Foundation” 1). Children with juvenile arthritis are determined to live normal lives while battling this disease. The long term effects of juvenile arthritis can mean many joint replacements over the years. Juvenile arthritis can also mean children losing their dreams of becoming police officers and firefighters. Aches and pains do not usually take away lifelong dreams.
In order to avoid disability children with arthritis have entire teams of healthcare providers monitoring their well being. “A pediatric rheumatologist is the most qualified physician to care for a child with JA” (Tucker 35). These doctors specialize in children with arthritis in. Pediatric rheumatologists have a greater understanding of what arthritis means for a child and what medications are safe to use. Pediatric rheumatologists are hard to locate and children will be lucky if they can find one in their area. “13 States lack a pediatric rheumatologist and throughout the country provider to population ratios exceed practice capacity” (Duke vii). Children often travel hundreds of miles to see a pediatric rheumatologist. Regular check-ups are usually scheduled monthly. Some children have IV infusion medications which have to be administered in the office weekly. When children have a bad flare they need to be seen multiple times in one week. Children also need to get help to regain or overcome the joint motion arthritis has taken from them. Children will often develop contractures making movement of the limb affected impossible. Arthritis can really impede on a child’s mobility. In the book, Your Child with Arthritis a Family’s Guide for Caregiving, the authors explain the importance of therapies:
Physical and occupational therapy are crucial elements of the treatment plan for children with arthritis. Therapy is as important as medications perhaps even more so! Medications reduce pain and inflammation, but medications alone will not restore lost motion in a joint or lost strength in a muscle. Strength and motion can only be regained through exercise. Physical and Occupational therapy are necessary to: keep joints mobile, keep muscle strong, regain lost motion in a joint or strength in a muscle, make everyday activities like walking or writing easier, improve general fitness and minimize pain. (Tucker 80)
Occupational therapists have special gadgets to help make daily tasks easier, like hooks for putting on socks and shoes. Physical therapists help evaluate quality of the child’s joints and quality of the joint’s mobility. The therapists also have treatments to help manage the pain. There are also exercises to help get the mobility of the joint back without surgeries. Finding a therapist for really young children can also be difficult. Not every therapist wants to work with children or has the proper equipment needed for working with children. The lack of therapists means more travel for children to far away clinics to appointments needed weekly. “It is definitely worth the travel to be seen by the physicians who specialize in the specific care of children with arthritis because their needs are so specific” (Lehman 32). All these doctors’ appointments and travel force the child to miss out on school causing them to fall behind. The travel and the work of treatment needed to cope with arthritis can be emotionally draining. “Psychologists are commonly employed, as the child's inability to perform age specific tasks without assistance may trigger depression” (Morgan 1). A positive outlook on things helps with the arthritis. Depression and stress can make the condition worse. Juvenile arthritis can affect the mind and body. Juvenile arthritis is so much more than aches and pains.
Four main types of medications are used to treat juvenile arthritis. “The first goal of drug therapy is to reduce inflammation (swelling), relieve pain and maximize ability to do things. Long-range goals are to prevent disease progression and destruction of bone, cartilage and soft tissues such as muscles, tendons and joint capsules” (“Arthritis Foundation” 1). The first line of defense is a good old NSAID (non-steroidal anti-inflammatory drug). A NSAID is like your ibuprofen or naproxen which can be purchased over the counter without a prescription. NSAID drugs help with inflammation and pain. When taken over long periods of time the drug can be damaging to the stomach, kidneys, liver and heart (“Drug Guide” 1). NSAID drugs offer little to no relief when given alone for patients battling arthritis. The next line of defense is DMARDSs (disease modifying anti-rheumatic drugs). DMARDs are still fairly new and the mechanism of how these drugs work is not completely understood. DMARD drugs are your hydroxychloroquine and methotrexate. DMARD drugs have been known to cause stomach, kidney, liver, lung and heart damage. They can also cause mouth sores, vitamin deficiencies and low immune systems. Some DMARD drugs have been taken off the market because of increased risks of pediatric cancers. DMARD drugs are administered by injection at home by the child’s parents. DMARDs have been so effective in the treatment of juvenile arthritis parents and patients are willing to take the risks (“Arthritis Foundation” 1). The third line of defense is steroids. The steroids can be given orally or injected directly into the joint. Steroid drugs can give immediate relief for some patients. The effects do not always last long and tolerances of steroids are built by patients. The side effects of steroids orally are acne, blurred vision, cataracts or glaucoma, easy bruising, difficulty sleeping, high blood pressure. The side effects of steroid injections are risks of infection and damage from the injection (“Drug Guide” 2). The last group is the biologic response modifiers or biologics. The biologics are the newest of drugs and are the least understood. The biologics are known to block certain proteins used by the immune system to cause inflammation. Research is being done now to try and develop a more effective and personalize drugs to treat juvenile arthritis. “One Day your child’s doctor may be able to design a personalized treatment plan for her arthritis based on a sample of their blood” (Dunkin 1). Doctors already know certain medications are more effective on different types of arthritis. New researches of genetics are leading doctors to believe there are many more subtypes of JRA than what is currently recognized. With new research doctors may also be able to predict if the medications chosen for use will cause side effects of a particular child based off of genetic predispositions (Dunkin 6). The new research is also proof of juvenile arthritis being much more complicated than the occasional aches and pains.
There are several other secondary conditions caused by the arthritis spreading to other areas of the body. Uveitis is inflammation of the eyes. Uveitis is often asymptomatic and is only detected by an eye appointment where the eyes are dilated. Eye exams are done up to every four months for the children who are ANA positive. Insurance companies and doctors do not always understand the necessity of the eye exams. “90% of children that have pauciarticular with a positive ANA will develop uveitis” (Foster 8). Because the statistics put these children at a greater risk eye appointments are need more frequently. If gone undetected uveitis will leave the patient blind (Lehman 89). Arthritis does not just hurt the body but can also take a child’s sight away. Inflammation can also go to the tendons and soft tissues surrounding the joints causing tendonitis. The most life threatening inflammation can go to the pericardium or liver causing inflammation around the heart or inflammation of the child’s liver. Psoriasis is another problem for children with arthritis. This condition is referred to as psoriatic arthritis. There can be a leg length discrepancy because of the inflammation affecting just one side (Tucker 95). Other conditions arise because to the long term use of medication. Acid reflux disease comes from over use of the NSAIDs. Acid reflux disease can cause major problems for a child. When acid reflux disease occurs the child is referred to another specialist, a pediatric gastroenterologist. The child with acid reflux is then prescribed more medications to control the acid in the stomach. Often times, the children with acid reflux are put through test so the doctors can see what is actually going on within the abdomen. Biopsies are done to rule out other conditions. The medications given for acid reflux in juvenile arthritis patients are usually high doses of drugs not commonly used for children. Pneumonia is a common problem for children with arthritis. Pneumonia in children with arthritis can be caused by certain medications or acid reflux disease. Blood work is done monthly, to monitor the arthritis and to check the liver enzymes to make sure the medications are not causing damage to the liver. Urine analyses are done to check on the function of the kidneys. Sometimes chest x-rays are done to check for damage to the lungs (Brewer 79). All of these test and procedures are a great deal more than just aches and pains for a child battling arthritis. Children with arthritis are often referred to as juvenile arthritis warriors. The battle of arthritis is often very hard and these young children have to diligently battle.
The hours spent traveling to doctors appointments and waiting to be seen seem like an eternity for a child just wanting to play. The rigorous schedule gets to everyone in the family. “A child’s chronic illness affects every member of the family. It consumes the family’s time and financial recourses and it changes the way family member’s interact with each other” (Tucker 274). Raising children is hard enough without adding in all the issues a chronic illness brings. Children miss school and parents miss work. “Having a child with rheumatic disease can have a dramatic effect on a marriage” (Tucker 280). Dealing with juvenile arthritis requires teamwork by parents. Work needs to be divided up to prevent one parent from missing work all the time. Turn taking may be the best way to handle the immense amount of appointments. One parent may do the therapy sessions while the other parent does the routine check-ups at the rheumatologist clinic. Good communication is the key to maintaining a strong relationship and dividing up duties so one parent does not feel overwhelmed. Another rigorous schedule for administering medications exists. Parents and children are left exhausted from all the work put into trying to manage juvenile arthritis. Explaining to a child why they have to do all the appointments and treatments is difficult. It is even more difficult to explain why the child still has pain and cannot keep up with the other children. Family outings become difficult to plan around a child that could feel fine one day and the next not be able to get out of bed. Amusement parks require heaps of walking and wheelchairs are often needed. Juvenile arthritis slows down the entire family. Siblings are left feeling guilty when the child with arthritis prevents the family vacations. Siblings can also feel left out and even jealous at times because of all the extra attention the suffering child gets (Tucker 278). Most of the time, the arthritis will calm down and a normal life will continue. Talking to a therapist can often be beneficial for the siblings as well as other family members. Family wants to help a child suffering from arthritis, but they also realize someday this child will grow up and be on their own. Children with arthritis have to learn how to manage daily skills independently (Huff 5). It is important not to accommodate the child so much that they never learn how to manage with daily activities on their own. From time to time the child’s physician will back down their medications. Some children will be lucky and they will find an effective medication and the arthritis will go into remission. Remission can be with medications and no signs of inflammation or immobility. Total remission is when a child is able to go off of the arthritis medications entirely. The arthritis is not exclusively gone. The lucky children will still be monitored by their rheumatologist. Remissions can last a long time, but there is always a chance an arthritic flare will hit again. There are a lot of long term worries with this disease: how will the medications affect the child? Will the child be able to have children of their own? Will their children have arthritis? Can they play team sports? Will the child’s school understand all the missed days? Will the child be able to walk to school? Can the child get up the steps at the school? Can the child get all the writing done at school? What kind of jobs will the child be able to do when they are grown? The list can go on and on. Juvenile arthritis is a great deal more than just a little aches and pains.
People need to be aware children do get arthritis. Remarkable strides are made by children with arthritis to try and maintain a normal life. “While this is normal for aging bodies, many children also feel this frustrating physical pain or discomfort” (Morgan 1). These children are battling a disease that has the power to cripple some grown-ups but these children show remarkable strength and pain tolerance. Even though they are faced with very grown up problems they still manage to find ways to have fun and be a kid. Author of the book, Living with Juvenile Rheumatoid Arthritis describes life with arthritis by stating that:
Juvenile arthritis can make it hard to just get up in the morning. Joints hurt and are very stiff. Getting ready for school can be tough. A child with JRA feels pain when he or she gets dressed. Even putting on socks or tying a shoe is hard and painful. His or her hands hurt while eating breakfast. Brushing one’s teeth makes the jaw ache. At school it is hard to write because their hands hurt. They may not want to stand up because their knees are sore. (Gray 15)
Even though a child may look fine in the afternoon a morning with arthritis could have still wreaked havoc on the day. Watching a child push through a painful morning is hard for parents and siblings. Every task seems like a mountain to climb. Some children are accused of faking because the pain is much more tolerable later in the day. Parents must travel great lengths to get their children properly diagnosed and treated. There is a great need in the United States for pediatric rheumatologists. If more pediatric rheumatologist existed the travel time would be less and proper diagnoses would be quicker. Educating parents and children are about what they can do to help manage juvenile arthritis is very important. Doctor’s appointment and therapy sessions are also very important for a child so the arthritis does not cause permanent damage to young still developing bodies. Medications are not always pleasant but are a necessity. Without medications many children would be bed ridden in horrible pain and their bodies would end up with deformities from the arthritis. Juvenile arthritis does affect all those around the child. There is a need for a team to help support with the demands this puts on a family. The arthritis foundation holds an annual juvenile arthritis conference to bring families together for educational workshops and moral support. Having a child with arthritis can make one feel alone and helpless. Knowing other people in the world are suffering from juvenile arthritis is very empowering (“Arthritis Foundation” 1). The effects of juvenile arthritis are much deeper than just aches and pains. By educating yourself on what is next to come one can be prepared for the worst and still hope for the best.
Works Cited
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Dunkin, Mary Anne. “JIA Treatment Gets Personal.” Kids Get Arthritis Too. 10-1. (2009):1-6. Print.
Duke, Elizabeth M. “The Pediatric Rheumatology Workforce: A Study of the Supply and Demand for Pediatric Rheumatologists.” Department of Health and Human Services Health Resources and Service Administration Bureau of Health Professions. Report to Congress. February 2009. Web. 30 March 2010.
Ellis, Justine A., Jane E. Munro and Anne-Louise Ponsonby. “Possible Environmental Determinants of Juvenile Idiopathic Arthritis.” Oxford Journals .Medicine Rheumatology. 49-3. (2010): 411-425. Web. 30 March 2010.
Foster, Helen and Athimalaipet, Ramanan.”’The Eyes Have it!’ The Need to improve awareness and access to early ophthalmological screening for juvenile idiopathic arthritis associated uveitis.” Oxford Journals .Medicine Rheumatology. 48.4. (2009): 330-331. Web. 30 March 2010.
Gray, Susan. Living with Juvenile Rheumatoid Arthritis. Chanhassen, MN: The Child’s World, 2009. Print.
Huff, Charlotte. “A Checkup for Parents: Attitude Is Everything.” Kids Get Arthritis Too. 10-1. (2009): 1-5. Print.
Lehman, Thomas MD. It’s Not Growing Pains: A Guide to Childhood Muscle, Bone and Joint Pain, Rheumatic Diseases, and the Latest Treatments. Oxford, New York: Oxford University Press, 2004. Print.
Morgan, Brad. “Treating the Symptoms of Juvenile Arthritis.” Just Mel Publishing. 29 March 2010. Web. 1 April 2010.
Smyth, Jonathan Blood. “Chronic Arthritis of Childhood.” Westchester Chiropractor for Back & Neck Pain Relief. 22 March 2010. Web. 1 April 2010.
Tucker, Lori, MD, et al. Your Child With Arthritis: A Family Guide for Care Giving. Baltimore, Maryland: The John Hopkins University Press, 1996. Print.
