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Caring for a child with arthritis
This material is presented mainly for parents of a child with arthritis.
As parents you carry much of the responsibility for the health care and emotional well-being of your child with arthritis. You will be the ones to:
- make sure she sees all members of her health-care team as needed
- see that she takes her medications as prescribed
- watch for any side effects the drugs may cause
- help her do exercises to relieve pain and stiffness
- provide encouragement and support to her and other family members
- work with teachers and school officials to make sure her needs are met
For this reason it is very important for parents to know as much as possible about their child's arthritis and its care as well as the effects it can have on family life. This information provides a starting point for discussions with your child's health-care team.
You may feel a little overwhelmed by all the information presented here. The impact of juvenile arthritis on a particular child may be mild moderate or severe. This information tries to cover the whole range. Please remember that your child may never experience all the symptoms described or have to take many of the drugs mentioned. They are presented for the sake of completeness.
Basics of juvenile arthritis
The word arthritis refers to inflammation (that is swelling heat and pain) involving the joints.
The most common form of arthritis in children is Juvenile Rheumatoid Arthritis (JRA). However children may also be affected by arthritis as a feature of other diseases including:
- Systemic lupus erythematosus: a chronic inflammatory disease characterized by fever and rash that may attack organs such as joints kidneys the brain lungs and heart.
- Juvenile dermatomyositis: a disease that causes a skin rash and weak muscles in children and may be accompanied by swollen joints.
- The spondyloarthropathies of childhood: diseases in children that involve the spine. In some (but not all) children with these diseases a protein called HLA-B27 is found on the white blood cells. The spondyloarthropathies of childhood include:
- Ankylosing spondylitis: a type of arthritis which primarily affects the spine and hips. It usually occurs in males.
- Reiter's syndrome: a form of arthritis that may cause inflammation of the urinary tract inflammation of the eyelids mouth ulcers and/or skin rash.
- B-27 Arthritis: a form of arthritis that occurs more often in older boys and affects only a few joints--usually the back and large joints of the legs such as hips knees and ankles. It occurs more often in children who inherit the HLA-B27 protein. If particular changes are seen in X-rays B-27 arthritis may be reclassified as Ankylosing Spondylitis.
- Psoriatic arthritis: a type of arthritis that may occur with the skin condition psoriasis. It affects both boys and girls.
- Scleroderma: a disease that can affect the skin joints blood vessels and internal organs.
- Inflammatory bowel (Crohn's) disease: a disease that can affect the intestines causing diarrhea and abdominal pain. It can be associated with arthritis and fever; these sometimes appear before the digestive symptoms.
Juvenile Rheumatoid Arthritis (JRA) affects about 71 000 children in the United States. It is a disease of the joints that may also affect other organs.
JRA is often a mild condition which causes few problems but in severe cases it can produce serious complications. Its signs and symptoms may change from day to day even from morning to afternoon. Joint stiffness and pain may be mild one day but become so severe the next that the child cannot move without great difficulty.
Periods when the arthritis is particularly active are called "flares".
There are at least three forms of JRA. Each form begins in a different way and has different signs and symptoms. The three forms are:
- Polyarticular JRA: this type affects five or more joints ("poly" means several or many and "articular" means joint)
- Pauciarticular JRA: this type affects four or fewer joints ("pauci" means few)
- Systemic JRA: this type affects both the joints and the internal organs ("systemic" means internal organs and other body parts are involved)
Each of these forms is explained on the next tabs.
Symptoms & Diagnosis
Juvenile rheumatoid arthritis is a chronic disease--one that may last for many years. Eventually there are good chances that your child will get well and experience no serious permanent disability. Children with JRA can usually keep up with school and many social activities. Some changes may need to be made when the child is in a flare or if there has been joint damage.
Sometimes the signs and symptoms of JRA may go away. When this happens it is called a remission. A remission may last for months or years or even forever. But no one can be sure this will happen in your child.
While most children with JRA do well in the long run parents should be aware of possible long-term consequences. Children with pauciarticular JRA have a higher risk of chronic eye inflammation. Some children with polyarticular or systemic JRA may have serious joint problems or develop other long-term complications such as decreased growth.
There is no fast and simple solution to JRA. The most important thing you can do is work with your doctor and other health professionals to manage the disease and keep it under control.
IncidenceAbout 200 000 children--or 2.9 in every 1 000--in the United States have some form of arthritis.
Arthritis is characterized by four major observable changes in the joints.
However since JRA affects each child differently your child may not experience all of these changes. Children also vary in the degree to which they are affected by any particular symptom. The most common features of JRA are:
Other symptoms your child may experience include joint stiffness following decreased activity and muscle (and other soft-tissue) weakness.
Joint inflammation is the most common symptom of JRA. It causes heat pain swelling and stiffness in joints. The lining of the joint called the synovium becomes swollen and overgrown and produces too much fluid (see figure 1). This causes swelling stiffness pain warmth and sometimes redness of the skin over the affected joints.
Since it usually hurts to move an inflamed joint the child will often hold it still in a bent position. If she holds a sore joint in a fixed position for a long time the muscles around the joint will become stiff and weak. After a while the tendons (tissues which connect the muscles to the bone) may tighten up and shorten causing a deformity called a joint contracture. Doctors usually prescribe an exercise program to help the child keep full motion in her joints and to keep her muscles strong.
In some children with severe disease long-lasting inflammation damages the joint surfaces. This is called joint erosion and can cause pain and limitation of motion.
Sometimes joint inflammation either speeds up or slows down the growth centers in bones. This can make the affected bones longer shorter or bigger than normal. If the growth centers in many bones have been damaged by inflammation a child may stop growing entirely. If no damage has occurred however the child will usually continue to grow once the JRA is under control.
There are three main types of juvenile rheumatoid arthritis:
Polyarticular means "many joints". In this form of JRA five or more joints are affected. Girls get polyarticular arthritis more often than boys. Because it can be severe the most powerful medications are recommended for this type of JRA. The most common features are:
Pauciarticular means "few joints". In this form of JRA four or fewer joints are affected. The most common features are:
"Systemic" means "affecting the body generally." Systemic JRA affects a child's Internal organs as well as the joints. It may take months to diagnose. This is the least common form of JRA. Boys and girls are equally likely to get this kind of JRA. In some the systemic symptoms of the disease and the fever may go away completely although the joint-related symptoms of arthritis may remain. The most common features are:
No one knows the cause of JRA but we know that it involves abnormalities of the immune system. The immune system defends our bodies against bacteria viruses and other foreign substances.
We do know that JRA is not contagious so your child didn't "catch" it from anyone and can't give it to anyone. We also know that heredity plays some part in the development of several forms of arthritis. However the inherited trait alone does not cause the illness. We think that this trait along with some other unknown factors triggers the disease. It is unusual for more than one child in a family to have arthritis.
Some research suggests that in autoimmune diseases such as JRA one type of white blood cells called lymphocytes loses the ability to tell parts of one's body such as cartilage from harmful agents like bacteria or viruses. This results in the release of chemicals that can damage the body's own tissues in a process called inflammation.
The painful joint swelling children with JRA experience is one example of inflammation; another is iridocyclitis an inflammation in the front of the eye near the iris.
Children may require considerable evaluation if the diagnosis of juvenile arthritis is being considered.
The signs and symptoms of Juvenile Rheumatoid Arthritis (JRA) vary from child to child. There is no single test that makes the diagnosis of JRA. Therefore your doctor may go though many steps to find out if your child really does have JRA. The main steps involved in diagnosis are:
In order to make a diagnosis of JRA the arthritis must have been constantly present for six or more consecutive weeks.
To make a correct diagnosis the doctor will ask questions about your child's recent symptoms medications she is taking and any previous medical problems.
The doctor may also want to know if other members of the family have had any other form of arthritis since some forms may be inherited.
During the physical examination the doctor will look for:
The doctor must be able to find evidence of joint inflammation to be sure the problem is JRA. A child who complains of aches and pains but who shows no joint changes may not have JRA. In a few cases a physically healthy child experiencing acute emotional stress may complain of sore joints.
An ophthalmologist may also need to examine your child's eyes to check for signs of iridocyclitis.
Although there are several laboratory tests that may support a diagnosis of JRA there is no single test that provides positive proof one way or another. The most common tests are:
If the diagnosis is particularly hard to make the doctor may do additional tests to rule out other diseases. The diagnosis of JRA is made by excluding other diseases. For example many viral infections can lead to temporary joint problems in children but in these cases the arthritis usually goes away rapidly. Other diseases can cause arthritis. Sometimes a bacterial infection of bone or cartilage can cause joint swelling or pain. Prompt diagnosis is important to allow proper antibiotic treatment.
X-ray examinations of joints may be helpful early in the course of the illness to find out if another condition such as a bone infection tumor or fracture is causing the problem. Later on X-rays may be used to check on joint damage or changes in bones. X-rays of the spine help the doctor tell if ankylosing spondylitis is present.
Your child's physician may also suggest Magnetic Resonance Imaging (MRI) a new technology that uses magnetic waves to provide images of the inside of the body without harmful radiation.
Joint fluid and tissue tests
A sample of fluid from one or more joints may be withdrawn by a needle and examined to find out if there is an infection in the joint.
Sometimes the doctor will take a small bit of tissue from a joint or a nodule for examination in the laboratory. This is called a biopsy.
GlossaryAntinuclear Antibody (ANA) A type of protein found in the blood of some children with polyarticular JRA; ANA is also found in many girls who have pauciarticular JRA and iridocyclitis. Arthritis General term that refers to inflammation of a joint. Erythrocyte Sedimentation Rate ("sed rate") A blood test which measures how rapidly red blood cells settle to the bottom of a small tube. The red blood cells of a person who has inflammation usually settle more rapidly than normal. This test may be helpful in following the progress of JRA. Hemoglobin Test Aroutine test which measures the amount of hemoglobin in the red blood cells. Hemoglobin is a substance that carries oxygen through the body. The test is often part of a complete blood count CBC). HLA-B27 A protein which can be found on the white blood cells of some people. This protein has been found in many adults who have ankylosing spondylitis. It is also sometimes found in children with JRA particularly older boys who have arthritis in only a few joints. Rheumatoid Factor A type of antibody found in the blood of some children with JRA (usually older girls with polyarticular JRA). Rheumatoid Nodule Lump on the elbow or on other points of the body which receive a lot of pressure. These are sometimes seen in children who have polyarticular JRA and a positive test for rheumatoid factor. Urinalysis Tests performed on urine to check for possible effects on the kidneys of drugs prescribed for JRA.
Many approaches to treating juvenile arthritis are available.
The goals of treatment for juvenile rheumatoid arthritis are to:
To reach these goals the treatment program usually includes:
Other types of treatment such as surgery may be necessary. Some physicians have also found that pain can be lessened by combining medical treatment with techniques such as progressive muscle relaxation meditative breathing and guided imagery.
Health care team
Your child's health care team may include different specialists who work together to offer your child a complete treatment program. Pediatric arthritis centers found in many major medical centers offer this care in one location. If you do not live near such a center your child's physician will refer you to the specialists she needs.
Your child's regular doctor
Works with your child's pediatric rheumatology team to help your child. If you do not live near a pediatric rheumatology center this doctor can consult by telephone with the nearest center. The doctor who already knows your child's medical history is usually the best person to see first. This doctor can work with general medical problems such as colds or normal childhood ailments.
A doctor who specializes in childhood arthritis
If you live near a pediatric arthritis center your regular doctor may refer you for a consultation or for continuous care. Board certification of pediatric arthritis specialists began in 1992. If there is no Board-eligible or certified pediatric arthritis specialist in your area your doctor may refer you to an adult arthritis specialist with experience and some training in the care of children.
Often serves as the link between the patient the physician the school and other members of the health team to coordinate care. Provides additional education about JRA its treatment and resources.
Helps with mobility problems. Measures joint motion and strength and prescribes special exercises leg splints shoes or other assistive devices to make walking and moving easier.
Helps with hand and arm function. Measures arm motion and strength and prescribes special exercises hand splints or other assistive devices to help with daily living skills such as dressing bathing or writing.
Medical social worker
Helps with the personal emotional family or financial problems which may occur with any chronic disease.
Checks for signs of eye problems and treats eye disease.
Answers questions about medications and their side effects and cost.
Counsels on the emotional difficulties of JRA. May also give psychological tests and help your child with her pain control program.
Assesses growth teaches nutrition and meal planning and prescribes special diets as needed.
Specializes in diagnosing and treating diseases of bones and joints and performs joint replacements if needed.
Dentist Orthodontist Oral Surgeon
Specialists in dental care who can help if arthritis in the temporomandibular joint results in a small jaw with crowding or deformation of the teeth.
A medical doctor who can assist with emotional problems.
Children with JRA sometimes have nutritional problems associated with their illness such as:
Although there is no special diet for children with arthritis and no special foods that will cure the disease proper nutrition can improve your child's overall health and promote normal growth. A registered dietitian can help you make sure your child eats properly by teaching you ways of improving your child's diet.
Loss of appetite often occurs when a child is in a flare. Some children with JRA might feel too sick or too tired to eat. To help your child:
Children with JRA may limit their physical activity if their joints are stiff and painful. As a result the child may gain too much weight. Corticosteroids can also cause a child to gain weight. Excess weight is unhealthy because it puts more stress on joints such as knees hips and ankles. Appropriate exercise combined with eating a well-balanced diet that includes planned snacks based on the basic four food groups can help your child keep a normal body weight.
Note: Taking medicines particularly NSAIDs with food helps prevent damage to the stomach and upper part of the intestine.
Exercise and therapy
Exercises are a very important part of treatment for JRA. For children with arthritis the purpose of regular exercise is to:
There are two kinds of exercise your child might do: therapeutic exercise and sports/recreational activities.
Therapeutic exercises make it easier for your child to walk and perform other activities of daily living like opening jars and writing. Range of motion exercises keep joints flexible and are especially important for children who have lost motion in a joint or whose joints have become fixed in a bent position called a contracture. Strengthening exercises build muscles.
A physical or occupational therapist will show your child how to perform therapeutic exercises at home. Most exercises must be done every day. Hot baths hot packs and/or cold treatments before exercise can make the therapy easier. The therapist can show you how to make the exercises part of play activities if your child is very young.
Sports & recreational activities
Recreational activities help your child to exercise her joints and muscles develop important social skills and have fun. But remember that recreational activities cannot take the place of therapeutic exercise. Activities that exercise the joints and muscles without putting too much stress on them like swimming should be encouraged.
Sports and recreational activities are important for children with arthritis to develop confidence in their physical abilities. Try to let your child pick her own sport or activity of interest while guiding her toward one that will not hurt her joints.
Strong muscles and joint protection are the keys to participating in sports. Although contact sports are never recommended even aggressive sports like soccer and basketball may not be off limits for your child. Ask your doctor or therapist for guidelines. Your child may be able to do special exercises to "train" for the sport she likes. Protective equipment can further reduce the risk of injury.
Several kinds of medications are used to control inflammation and relieve the pain of arthritis. Your child's doctor will generally try non-steroidal anti-inflammatory drugs (NSAIDs) or aspirin before adding if necessary a more potent anti-rheumatic drug or corticosteroid.
Generally NSAIDs reduce swelling and pain in the joints but do not by themselves stop the slow breakdown of joint tissue which may occur in polyarticular JRA. These drugs however are effective in treating JRA in many children. The more powerful anti-rheumatic drugs can often over time stop the breakdown of joint tissue. But these drugs also may have more serious side effects.
All drugs may have side effects but the effects vary from child to child. One child may respond well to one drug while another with a similar condition may not benefit or may suffer side effects from the same medication. It is very important that the child's urine blood and liver function are tested at regular intervals to make sure everything is normal.
Because many drugs take weeks or months to show any benefit the physician may keep a child on a particular drug for some time before trying another unless there are serious side effects.
An important message about arthritis medications: don't change the amount or stop them without first asking your doctor.
Non-steroidal anti-inflammatory drugs (NSAIDs)
Your child's physician will probably prescribe a non-steroidal (containing no steroids) anti-inflammatory (reducing inflammation) drug as a first step to control swelling and pain. NSAIDs are helpful in all types of JRA. They work by limiting the release of irritating chemicals by the white blood cells. NSAIDs can also be effective in lowering fever.
NSAIDs commonly used to treat JRA are ibuprofen (sold under trade names like Advil Nuprin and Motrin) naproxen (Naprosyn) and tolmetin.
Most NSAIDs are equally effective but a particular child may respond better to one than to another.
Dose: These drugs may be given as a pill or liquid. The dose varies depending on the specific NSAID used.
NSAIDs can have side effects including:
Aspirin may be used to:
Dose: Children with JRA for whom aspirin is prescribed must take large amounts of it three or four times a day. Young children should not suck or chew on the aspirin because this may erode the chewing surfaces of the teeth and irritate the gums. Instead try pre-crushing the dose and having the child swallow it in a small amount of a favorite food such as applesauce or yogurt.
Aspirin may have the following side effects:
If your child is taking aspirin and develops chicken pox or flu she should stop taking the aspirin for a while. Your doctor will tell you what to do if this happens.
More potent anti-rheumatic drugs
The more powerful anti-rheumatic drugs are not usually given by themselves; they are most often effective when given in addition to a NSAID. They are usually prescribed when NSAIDs alone have not been effective or when joint damage occurs usually in children with polyarticular disease. These more powerful drugs are often able to limit the amount of inflammation seen in severe JRA.
Methotrexate works primarily by decreasing excessive white blood cell activity. Its use in children is fairly recent. However Methotrexate has been found to be effective in treating children with active polyarticular JRA and some patients with severe pauciarticular disease.
Dose: Methotrexate is normally given weekly in low doses usually as a pill taken by mouth. It may also be given by injection.
Possible side effects: In the low doses at which Methotrexate is usually prescribed few serious side effects have been reported. However regular laboratory monitoring is important. Side effects may include:
The "gold" used in gold treatment is actually a liquid gold salt. It works by interfering with several different functions of white blood cells.
Gold treatment is used to:
Dose: Gold is given in two ways--by injection into the muscle or as oral gold in a capsule taken by mouth. Injections are usually given every week for five or six months then once or twice a month for as long as necessary. Oral gold (auranofin) is taken daily.
Four to six months may pass before a child responds to gold treatment. Gold is not effective in all children; when it is treatment may need to be continued for many years.
Possible side effects: Gold can have side effects which may make it necessary to stop treatment. Regular laboratory tests are needed to detect any adverse reactions. Side effects may include:
Hydroxychloroquine sold under the trade name Plaquenil is another drug found to work in some children with polyarticular JRA and other forms of arthritis. Plaquenil is used to control swelling and pain in joints. While not helpful in all cases Plaquenil may be useful in an individual child particularly when Methotrexate or gold have not been completely effective. Plaquenil is used to control swelling and pain in joints.
Dose: Plaquenil is given in pill form for many months. Your doctor will determine the correct amount. Plaquenil is used to control swelling and pain in joints.
Possible side effects may include:
Keep this drug out of reach of small children. An overdose of this medication can be fatal.
Corticosteroid drugs are used to treat JRA especially the systemic form when it is very severe and has not responded to other drugs. Corticosteroids used to treat JRA include prednisone and cortisone. These drugs contain cortisone and are not related to the synthetic male-hormone steroids some athletes use.
Corticosteroids are used to:
Corticosteroids work swiftly and effectively. However because of their side effects they are used with caution.
Dose: If corticosteroid drugs are prescribed the lowest possible dose will be used for the shortest length of time. Usually the drug is taken by mouth as a pill or liquid or it can be given intravenously directly into a vein. It can also be given as an injection into the joint itself or into a muscle or vein. Other types of steroids include eye drops used to treat iridocyclitis and steroid creams for skin problems.
Possible side effects: Corticosteroids taken as a pill or intravenously for long periods of time may cause severe problems such as:
Surgery is rarely used to treat JRA early in the course of the disease. However surgery can be used to:
If surgery is necessary your doctor may consider joint replacement or soft tissue release as treatment.
In joint replacement surgery a child's entire joint is replaced with an artificial joint. This procedure is used mainly in older children whose growth is complete and whose joints are badly damaged by arthritis. This operation is usually used to replace the hip knee or jaw joints. It can reduce pain and improve function.
Soft tissue release
Soft tissue release may sometimes be used to improve the position of a joint which has been pulled out of line by a contracture--a condition caused by a tightening and shortening of the tendons. In this operation the surgeon cuts and repairs the tight tissues which caused the contracture allowing the joint to return to a normal position.
Splints or braces
Splints are used to keep joints in the correct position and to relieve pain. If a joint is becoming deformed (bent in the wrong position) a splint may be used to stretch that joint gradually back to its normal position. Commonly used splints include knee extension splints wrist extension splints and ring splints for the fingers.
An occupational or physical therapist usually makes the splint. Arm and hand splints are made from plastic; leg splints are sometimes made of cast material. A splint is custom-made for your child. The therapist will adjust the splint as your child grows or as the joint position changes.
Splints are usually worn only at night while sleeping to keep the joint extended.
It is important for your child to move and use her joints during the day. At times however your child may also wear a different kind of splint a functional splint (often called an orthosis or brace) during the daytime.
The most important aspect of dental care for everyone is the prevention of dental disease. Some children with JRA may have difficulty brushing and flossing. Your dentist may suggest various toothbrush handles electric toothbrushes floss holders toothpicks and rinses that will help your child maintain healthy teeth and gums.
Always inform your dentist about the status of your child's disease and the medications she is taking. Both the JRA and the medications used to treat it may affect the child's oral health and development. The dentist will also consider these when he is planning any treatment. These considerations may be especially important if general anesthesia sedation or oral surgery are being planned. Older children who have had joint replacements may require an antibiotic before dental treatment.
The joint in front of the ears where the lower jaw connects to the base of the skull is called the temporomandibular joint (TMJ). Arthritis may affect this joint in the same way it does others by causing pain stiffness and altered growth. Jaw exercises and heat-cold therapy may be recommended for the pain and stiffness. If the lower jaw does not develop properly the child with JRA may develop a severe overbite. Your child's dentist may recommend an early consultation with an orthodontist if this occurs. Surgery is also sometimes necessary for this condition.
A child with JRA especially if she is in a flare may not always have the stamina for even routine dental work. If possible shorter appointments may be helpful. Also schedule an appointment at the time of day your child has the most stamina.
An eye inflammation called iridocyclitis or closely-related forms called anterior uveitis and iritis are sometimes associated with JRA especially the pauciarticular type. Iridocyclitis occurs more often in young girls with pauciarticular JRA whose blood contains a kind of protein known as an Antinuclear Antibody (ANA). In iridocyclitis certain tissues in the eyes become inflamed. But this inflammation may not cause any obvious eye symptoms until it has gone on for a long time. The symptoms of iridocyclitis which might appear after a while include red eyes eye pain and failing vision.
It is important for all children with JRA to have their eyes checked by an ophthalmologist (an eye doctor who is an M.D.) as soon as they are diagnosed. The ophthalmologist can detect the problem early and start treatment to avoid any serious problems.
Children should continue to get periodic eye exams even when the arthritis is inactive and they have no joint swelling because iridocyclitis may still be present.
Your child should visit the ophthalmologist for a complete medical eye evaluation including a slit lamp test. This is a simple and painless procedure that can spot problems before you can tell anything is wrong. The eye examination may need to be repeated from time to time depending on your child's risk for developing the eye problem. Your doctor will tell you how often your child should be examined. If iridocyclitis is found early and treated properly it is unlikely to cause any trouble. If it is allowed to go on it can result in impaired vision or even blindness.
If your child has iridocyclitis eye drops will be prescribed. One type of eye drops is used to dilate the pupil (make the black spot in the center of the eye bigger). This will keep scars from forming on the pupil. Another kind of eye drop contains a corticosteroid drug which will decrease the inflammation in the eye tissues. When corticosteroids are taken in this form the side effects are not as serious as when the drug is taken by mouth. If the drops cannot control the iridocyclitis your child may need to take an anti-inflammatory medication in pill form.
Morning stiffness relief
Many children experience a period of stiffness upon getting up each day. Morning stiffness can be one of the best measures of disease activity; the longer the morning stiffness lasts the more active the disease. Morning stiffness can be relieved by these methods:
Strategies for coping
Your child may feel angry or sad about having arthritis.
But be aware that you as parents siblings and other family members may also have troubling feelings about the disease and its effect on the family. However acceptance and settling into a routine will benefit everyone in the family.
When you are first told your child has arthritis you might feel shocked numbed or disbelieving. You might also feel guilty and ask yourself if something you did or didn't do caused your child's arthritis. While these thoughts are common to all parents whose children are ill work hard to put such thinking into perspective. Remember: you are not the reason for your child's arthritis.
The child with arthritis may feel many different emotions. Children can feel "hurt" by an illness that isn't their fault blame parents for the illness adopt a "why me?" attitude engage in self-pity or become angry because of restrictions on activities. They may also resent other children who are well including brothers and sisters.
Other children in the family may feel left out and resentful because of the amount of time and attention the child with arthritis requires. Or they may feel guilty as if their normal "bad thoughts" towards their brother or sister had somehow caused the illness.
Children may over-identify with the brother or sister with special needs. Some feel a pressure to achieve or make up for what their brother or sister can no longer do. Others want to involve themselves in care giving--to the point where they give up their own normal activities. In these cases try to help siblings find other ways to deal with their feelings. Whenever possible let brothers and sisters settle their own differences. Encourage siblings to talk with peers who live in homes with similar concerns. The key to dealing with all these emotions is to talk about them with one another.
Talk to your child's brothers and sisters about arthritis--let them express their feelings about the disease. Encourage the family to treat the child with JRA as they did before she became ill--but at the same time do remember that she will need some special attention.
Talk to your child about how she feels about the illness. Allow your child to express her anger about arthritis from time to time.
Encourage your child to develop her special talents.
Expect your child to behave as well as other children--do not give her special privileges like avoiding light household chores that she is physically able to do just because she has arthritis.
Encourage your child to learn as much as she can about arthritis and about her treatment program. Older children can be responsible for taking medications on time reporting any medication side effects to you and following an exercise program. Prepare them for the change to adult health-care.
Remember: Your attitude toward arthritis will affect the way your child feels about arthritis.
Try not to overprotect your child. Your child might become too dependent if you do everything for her or if you keep her from tasks which she is capable of doing. Don't be manipulated into allowing activities that shouldn't be done but compromise when you can. Being as consistent as possible will help your child learn what is expected. Plan special time to spend alone with your spouse or with the entire family. When your child first becomes ill you may set aside relationships with other family members. It is important however to continue to talk and spend time with all family members.
The child with arthritis may develop emotional or behavioral problems that you cannot deal with alone. Other family members may feel overwhelmed. Fortunately help is available.
Children with arthritis should nearly always attend a regular school. They should not be isolated from other children of the same age. But because of JRA your child may need some special materials and services to help her get along in a regular school.
It is important to educate your child's teachers the school nurse and the principal about arthritis and its effects on your child. In general teachers are cooperative and understanding about JRA. In a few cases it may be necessary to ask your child's physician or a member of her health-care team to intervene.
Federal laws which give your child rights by barring discrimination against children with disabilities in public schools and requiring private schools to be accessible include:
For more information on these laws contact the Special Education Director in your state's Department of Education.
Asking for helpMany Arthritis Foundation chapters and some pediatric rheumatology centers have AJAO family support groups that provide resources avenues for sharing ideas and feelings and a place to meet and learn from other families who truly understand what your child is experiencing. If emotional stress becomes too great it may be helpful to seek professional counseling. The doctor nurse or medical social worker may be able to help you or may be able to refer you to other sources of help. AJAO National Family Conferences held each year in a different region of the country give parents the opportunity to meet others and to learn from experts about many aspects of managing JRA while children enjoy special activities. Regional juvenile arthritis conferences may also be offered by local chapters.
Condition researchThere is a great deal of research going on to find out what causes arthritis. Once this is known it may be possible to cure this illness or to prevent it from starting.
Some of this material may also be available in an Arthritis Foundation brochure. Contact the Washington/Alaska Chapter Helpline: (800) 542-0295. If dialing from outside of WA and AK contact the National Helpline: (800) 283-7800.
Adapted from the pamphlet originally prepared for the Arthritis Foundation by Michael L. Miller M.D.; Andrew P. Tanchyk DMD; Andrea Kovalesky RN; Carol Henderson RD LD; Peggy Richey; Bethany DeNardo PT MP; and James E. May MA ME.d. This material is protected by copyright.