Living with a child diagnosed with juvenile rheumatoid arthritis, recognizing the reality and severity of the illness, can cause a whole range of unexpected feelings in family members – from shock to denial to guilt. Some family members may even ask themselves if they are in some way responsible for their child's JRA. While these kinds of thoughts are common to families with chronically ill children, it is important to understand that you did not cause the arthritis.

Because JRA presents special challenges to your entire family, learning about the progression of the illness, about the various treatments available today and about its flare-ups and remissions, will benefit everyone.

When your entire family understands that having JRA is nobody’s fault and then learns how to personally cope with the illness, while maintaining a positive attitude, everyone benefits, especially your child who has the illness. 
 
Many children diagnosed with JRA initially feel angry or depressed about the illness. Some blame their parents, engage in self-pity, become annoyed at the restrictions on activities, and/or resent siblings who do not have the illness. Parents and other children are likely to feel resentment about having to deal with the illness and about how its presence affects their interactions with each other.

Children may feel left out and resentful because of the amount of attention given to the sibling with JRA. Or they may feel guilty that they are healthy while a sibling is so ill .Some children may overly identify with the brother or sister who has special needs. Others can feel pressure to make up for what their sibling can no longer do or they might want to involve themselves in care-giving to the point where they give up their own activities.

Talk to your children about their concerns, and encourage them to receive counseling from family therapists, to help them find ways to deal with their feelings.

It is also important to talk to your child who has JRA, to dialogue about how he or she feels about the illness. Allow your child to express anger about the arthritis from time to time, while expecting him or her to behave as other children do and to have many of the same responsibilities. Avoid giving him or her special privileges when possible. Your child will benefit by doing chores that he or she is physically able to do.

Encourage your child with JRA to learn as much as possible about the illness and about the treatment program. Older children can be responsible for taking medications on their own, reporting any side effects to you and the doctor, and following exercise programs. Having these types of responsibilities will help them prepare for the transition to adulthood.

Try not to overprotect your child, as he or she can become too dependent on you. Being as consistent as possible will help your child learn what is expected.

When your child first becomes ill with arthritis, you may feel inclined to set aside relationships with other family members. But it is important to continue to talk to and spend time with all family members. Plan to spend special time alone with your spouse and with each of your other children.

Important points to remember

1. Discuss the problems and concerns about juvenile rheumatoid arthritis with your child; let him/her know that everything will be OK.
2. Treat your child as normally as possible.
3. Ensure that your child receives appropriate medical care and follows the doctor's instructions. Because juvenile rheumatoid arthritis affects each child differently, treatments that work for one person may not work for another. If the medications that the doctor prescribes do not relieve symptoms or if they cause unpleasant side effects, children and parents should discuss other choices with their doctor. A child with JRA will be more active when symptoms are controlled.
4. Exercise and physical therapy play important roles in managing juvenile rheumatoid arthritis. Parents can arrange for children to participate in activities that doctors and therapists recommend. During symptom-free periods, many doctors suggest playing team sports or engaging in other activities to help keep the joints strong and flexible. Play time with other children, particularly engaging in team sports, is a vital aspect of social development.
5. Work closely with your child’s school to develop a suitable lesson plan and to educate the teacher and the child's classmates about JRA. Because some children with JRA may be absent from school for prolonged periods, advise the teacher in advance that you might request that assignments be sent home. Some minor changes, such as obtaining an extra set of books or leaving class a few minutes early to get to the next class on time, can be a real help. With proper attention, most children progress normally through school.
6. Allow your child to express anger about having juvenile rheumatoid arthritis. Explain that getting JRA is nobody's fault. Some children believe that JRA is a punishment for something they did.
7. Connect with others. Consider joining a support group. The American Juvenile Arthritis Organization runs support groups for people with JRA and their families. Support group meetings educate the entire family about the illness, while providing the chance to talk to other young people and parents, helping the child and the family cope with the condition.
8. Work with therapists or social workers to learn to adapt more easily to the lifestyle changes JRA brings.
9. With proper therapy, children with JRA usually improve over time. Indeed, the vast majority of children with arthritis grow up to lead normal lives.  Even in severe cases, when proper medications are administered, along with physical and occupational therapy, and surgery if necessary, children usually remain mobile and functional.
10. There are so many effective medications for JRA today, and so many other treatments that help treat children with this illness that the majority of children improve immeasurably.

The earlier your child gets proper diagnosis and care, the better the results

There are three important steps to take when working with a child with JRA.

1. The illness needs to be properly diagnosed.
2. A treatment program by an experienced pediatric rheumatologist needs to be prescribed.
3. The patient and family need to be properly educated about the illness.

Once a child with JRA is properly diagnosed and treatment is begun, it is the family’s, the doctor’s, the school’s and the child’s responsibility to make sure that he/she reaches full potential.

Children who have JRA have goals, dreams and desires. They want to have careers, get married and have families. While few children with JRA will go on to be professional athletes or military officers, fewer still will be “totally disabled” by their illness or need to use wheelchairs.

No one knows what causes JRA. We do know that it usually does not run in families and is almost never passed from a parent to a child. JRA is not caused by a disease or infection that either parent may have had at any time. Nor, is it connected to any event during pregnancy. And although fever and rash may occur in some children, JRA is definitely not contagious. JRA is not caused by eating the wrong foods, nor is there any proof that it can be improved by specific diets. The onset of JRA may coincidentally follow a routine infection or injury, but such common events do not cause chronic arthritis. 

Although many people feel that arthritis improves in warm, dry climates, there is no documented proof that this is so. 

The body's immune system is such a complex, finely tuned defense mechanism that when a person is ill, the body creates inflammation that then fights and eliminates the infection. When JRA occurs, however, the body creates inflammation of one or more joints for no known reason with no apparent illness. In children with JRA, the immune system appears to be overactive, and may be responding inappropriately to infection or may mistakenly identify something in the body as an infection, causing continuous inflammation. This inflammation results in warm, stiff, swollen and painful joints.

Yet, treatment for JRA has advanced dramatically in the last 20 years. Even without a known cause, the illness can be controlled and symptoms can be greatly eliminated, enabling your child to participate effectively in school, sports, family and social activities.

Advice from Parents

 
Because the goal of Kids With Arthritis is to have your child lead as normal a life as possible, we are passing on advice, insights and knowledge from parents/readers. Parents are often explorers into the latest research, medications and developments about JRA, and into opportunities for growth, enjoyment of life and new adventures. Please feel free to email or fax us whatever helpful information you have that can improve the lives of kids with JRA.
Camps: A letter about a camp for kids with JRA (and other serious illnesses) led us to that camp’s website, thepaintedturtle.org. The Painted Turtle in Lake Hughes, 70 miles from Los Angeles, a three-year-old non-profit camp, is free to all children who qualify. On a 173-acre tract of land, it is like a rugged summer camp with a rustic dining hall, lakes with boathouses, a gymnasium and log cabins, all in a $28 million, state-of-the-art medical facility. The Painted Turtle is part of the worldwide Hole in the Wall Camps, started by actor Paul Newman. These camps inspire kids to overcome perceived limitations and achieve things they never thought possible.
Camp Dakota in Lapeer, Michigan, a one-week summer camp for children with arthritis, is created to help campers build confidence, independence and lasting friendships. In addition to traditional camp activities as boating, swimming, archery and campfires, Camp Dakota provides medical support and learning sessions about juvenile arthritis.
Coming out: One parent wrote that her 9-year-old child didn’t want the other kids to know about her illness, even though she couldn’t do all the things the other kids could do. The parent convinced her daughter to have the school nurse speak to the class, and wrote, “The kids finally understood some of what she is going through, and why she has to be so different and they were OK with it.”
Computer therapy: It is OK for your kids to play computer games, which is great therapy for the fingers and hands, says one parent.
Cooking therapy: It is great therapy for the fingers and the hands, plus the smile the activity brings to your child when she can do something for someone else is priceless.
Diagnosis: Parents talk about diagnosing JRA, and how it is often based on excluding other things. They talk about ruling out crohn’s disease and fibromyalgia and having bone marrow testing to rule out leukemia.
Enbrel: One parent wrote about injecting Enbrel, a drug that is chilled until used. Because injecting the chilled medicine was painful to her child, that parent learned that Enbrel can be left out of the refrigerator for up to four hours. Other parents say that leaving the drug out of the refrigerator for 10 to 30 minutes is long enough to cut down on pain during injection. Another parent mixes the drug with the vial provided, then draws out the solution, using a higher gauge insulin syringe than the one provided for a less painful injection. Side effects from Enbrel can include headache and mild nausea.
Enliven® Services is a program for Enbrel users, offering a variety of educational materials, and free phone consultation with specially trained registered nurses. Call 1-888-4 ENBREL (1-888-436-2735) 8 am to 11 pm, Eastern time, 7 days a week.
Eye care is of great importance to parents (of kids with JRA) who have concerns about the development of cataracts and glaucoma. Some have seen good results with Pred Forte eye drops.
Fish oils: Several parents have written about the benefits of taking fish oils, while one Mom says that the supplement is a natural remedy for arthritis. Another says that eating pineapple has produced similar effects as taking fish oils. (Bromelain, discussed in the Alternative section of kidswitharthritis, is a pineapple derivative.) 
504 meeting: Many parents schedule Section 504 meetings at their children’s schools. It is a right that kids have, says one parent. It will protect your child, says another. A third parent suggests contacting the school district’s special services department. (See more about Section 504 meetings in JRA in schools in kidswitharthritis.)
Growing pains are never present in the morning for kids without JRA, which distinguishes them from kids with the illness, says one parent, adding that JRA pain is more severe in the morning or constant throughout the day.
Humira: To minimize the pain during injection, numb the injection area with ice, and let the medication warm up for 30 minutes prior to injecting. Another parent suggests injecting into the upper hip as there are fewer nerve endings there, while a third injects the medicine slowly.
Hyperbaric oxygen therapy: One child receiving this therapy is experiencing a reduction of JRA symptoms. This non-traditional treatment is used for decompression sickness, exceptional blood loss, thermal burns and conditions where resistance factors are compromised, such as disorders involving immunosuppression. In the hyperbaric chamber, the patient breathes pressurized oxygen which dissolves extra oxygen into the blood plasma to form new capillaries into wound areas.
Joint changes, particularly changes for the worse, do not mean that current medications are not working. The changes could be caused by delayed damage from before the meds began working, or from when treatment was delayed.
Kineret is a biologic medication that needs to be chilled before use. One parent takes it out of the refrigerator an hour before injecting, then injects it while her child is asleep.
Medical anorexia is a common problem in kids with JRA, says one parent. But doctors and other experts add that kids with the illness do not improve from fasting or using fad diets.
Methotrexate, an older DMARD, is used by many kids with JRA. One parent wrote that the medication gives her child pain-free-days, while another likes the fact that it is available in pill form, adding that it took six to eight weeks to work well. A few parents wrote that the medication upset their children’s stomachs, even causing diarrhea or vomiting, but that switching to injections of MTX eliminated those problems. Another parent said that the drug caused mood swings. Still other parents say that combining Methotrexate with Enbrel provides good results.
Multiple issues are common in kids with JRA, including the presence of uveitis, chronic sinusitis and kidney reflux problems. It is not unusual to have secondary illnesses or issues including: asthma, cellulitis, crohn’s disease, fibromyalgia, hypothyroid problems, lupus and vasculitis.
Music therapy: Encourage your child to write and play songs that tell how they feel. One parent suggests that having your child play the guitar is good therapy for the fingers and hands. Another family bought their daughter a karaoke machine, and was amazed at her beautiful voice, adding that singing has given her confidence that the arthritis took away. The family plans karaoke singing nights to bring happiness to everyone in the house.
Naproxen is an effective NSAID, according to several parents. One Mom wrote about her daughter with polyarticular arthritis who started on naproxen, then added methotrexate. The Mom said that the drugs reduced swelling and gave her daughter mobility. While naproxen is effective in reducing inflammation, several parents have observed that it causes stomach disorders, bowel disorders, diarrhea and sometimes vomiting. If diarrhea is present, one parent gives her child fiber supplements, such as Metamucil, or high-fiber bars to eat.
NSAIDs, often the first type of medication used for kids with JRA, is another topic of discussion. While paracetamol or Tylenol® does not upset the stomach, one parent said that it is not really an NSAID. She said that it is only a pain and fever reducer, and that she uses it alternately with another medication to reduce a really high fever.
Pediatric splints from comfysplints.com are made for the elbows, knees and wrists. They are soft and fabulous, one parent says. They are padded with soft fabrics and come in pretty colors.
Siblings: Because parents of kids with JRA are concerned about genetic factors associated with the illness, one Mom researched the topic. Although some studies report an increased prevalence of inflammatory arthritis among relatives of JRA patients, only about 300 sibling pairs with JRA are estimated to be in the USA.  
Sports: One parent said that her child can participate in many kinds of sports, including skiing, snowboarding, track, biking, basketball and skateboarding, but be careful when skateboarding on concrete as it can be painful to the joints.
Stomach problems: One parent gives her child Zantac to reduce stomach acid 20 minutes before giving her an NSAID. Another parent has her child munch on crackers, eat yogurt and popsicles to soothe an upset stomach, while a third feeds her kid hot cereal, made of steel cut oats, other grains, sliced almonds, dates and raisins, available at Trader Joe’s and Henry’s. A fourth parent uses a heating pad on the child’s stomach.
Tiredness is a common problem of kids with JRA, as the body is fighting itself, while the meds cause more exhaustion. Many kids will fight to be “one of the guys,” then deal with exhaustion consequences later at home. If tiredness is a problem, naps are OK.
Tocilizumab, a biologic with the generic name for Actemra, marketed in Japan and currently available in Australia, apparently produces great results for systemic JRA. It should soon be in clinical trials in the United States.
Ultrasound: One parent explained that ultrasound therapy, popular in European countries for treatment of inflammation, has helped to minimize swelling in her child’s hands.
Viruses going around, viruses among friends, even if your own child hasn’t caught anything, can affect his/her condition, possibly causing flare-ups.
Water therapy is useful for many kids with JRA, while one Mom explains that aquatic therapy is especially good as it involves flexibility exercises in the pool.      
 Wax baths: A paraffin wax bath kit bought at K-Mart was the best investment I ever made, one parent said. The parent dunked her daughter’s feet in the wax, wrapped them in plastic wrap, then put them in slippers. She did the same with the hands, putting them into oven mitts, and wrapped her daughter’s elbows and knees in plastic wrap after coating them with the wax. For more than hour, the child exclaimed over and over how wonderful she felt to be free of pain. Another parent said that her daughter loves her wax machine and learned to use it all by herself. She dips her hands, feet and ankles into the wax, again and again, until the wax is layered. 
 Weather can play a role in flare-ups. The high and low pressure of the air, as well as the rain, can affect your child’s condition. It is a good idea for parents to keep a daily journal of the weather conditions, alongside the condition of the child. You will likely notice a pattern.