What a JA Diagnosis Means for Your Child
Experts answer common questions about juvenile arthritis (JA) and how it may impact your child’s life.
By Mary Anne Dunkin
Can my child still play sports? Will he have a normal school life? Will she eventually outgrow the disease? Is there anything I can do? If your child was recently diagnosed with juvenile arthritis (JA), your mind is undoubtedly filled with questions as you navigate this uncharted territory. Below, pediatric rheumatologists answer some of the most common questions they hear from parents of newly diagnosed children.
JA Q & A
Q: Can my child still play sports?
A: It is certainly possible for a child with arthritis to play sports. In fact, as long as your child feels up to it and uses good judgement, participation in sports and other types of physical activity should be encouraged, says Karen Onel, MD, chief of pediatric rheumatology at the Hospital for Special Surgery in New York. Physical activity offers several benefits, including improving joint mobility and building strong muscles and bones. Participating in sports offers the added benefit of teaching leadership and teamwork skills.
Kelly Rouster-Stevens, MD, associate professor of pediatrics at Emory University School of Medicine in Atlanta, offers one caution: If joints such as the knees, ankles and wrists have active disease, children may want to avoid high-impact sports. But once the disease is controlled, any sport they are comfortable with is fine, she says, noting that her patients include varsity football, basketball and soccer players.
If you have concerns about sports safety, discuss them with your child’s rheumatologist or physical therapist.
Kelly Rouster-Stevens, MD, associate professor of pediatrics at Emory University School of Medicine in Atlanta, offers one caution: If joints such as the knees, ankles and wrists have active disease, children may want to avoid high-impact sports. But once the disease is controlled, any sport they are comfortable with is fine, she says, noting that her patients include varsity football, basketball and soccer players.
If you have concerns about sports safety, discuss them with your child’s rheumatologist or physical therapist.
Q: Will my child be able to go to school as normal?
A: It’s important for your child to attend school daily just like his peers, but there will be occasions he may need to be out for doctors’ appointments, sit out at PE when he’s feeling bad or request extra time to get to class or write a paper if his joints are sore. Dr. Onel recommends contacting your child’s school right away about setting up a 504 plan, a formal arrangement that ensures your child gets the special support he needs at school. Even if your child’s arthritis is under control, it’s still a good idea to have a plan in place just in case his symptoms act up.
Q: Is there anything I can do to slow down the disease?
A: The best thing you can do to slow down the disease is to ensure your child takes her medication as prescribed and sees her doctor regularly to monitor disease activity. Fortunately, with the medications available today, most arthritis cases can be well-controlled. There will likely be times when your child shows no signs of disease.
If you discover or suspect that your child is having a flare (her disease is becoming more active – often evidenced by painful, swollen joints), it is important to get in touch with her doctor to see if she needs a boost or change in medication.
Aside from good medical treatment, it is important that your child practices healthy habits, including getting plenty of sleep, participating in regular physical activity and eating a balanced diet, says Dr. Onel. She cautions against special diets that will make your child feel left out or resentful. If it’s a good diet for your child with arthritis, it’s a good diet for everyone in the family, too, she says.
Because arthritis can affect growing bones, Dr. Rouster-Stevens recommends serving your child calcium-rich dairy products and asking her doctor if she needs a vitamin D supplement. Other calcium-rich foods include leafy greens, beans and soy-products and fortified orange juice and cereal.
If you discover or suspect that your child is having a flare (her disease is becoming more active – often evidenced by painful, swollen joints), it is important to get in touch with her doctor to see if she needs a boost or change in medication.
Aside from good medical treatment, it is important that your child practices healthy habits, including getting plenty of sleep, participating in regular physical activity and eating a balanced diet, says Dr. Onel. She cautions against special diets that will make your child feel left out or resentful. If it’s a good diet for your child with arthritis, it’s a good diet for everyone in the family, too, she says.
Because arthritis can affect growing bones, Dr. Rouster-Stevens recommends serving your child calcium-rich dairy products and asking her doctor if she needs a vitamin D supplement. Other calcium-rich foods include leafy greens, beans and soy-products and fortified orange juice and cereal.
Q: Is my child more likely to get sick?
A: Both the disease and the medications your child takes for it may increase her risk of infections. But there are things you can do to reduce that risk. First, make sure your child receives all age-appropriate vaccinations, with one exception: Children taking corticosteroids should not receive live vaccines including chickenpox, MMR or nasal flu vaccines. Other children in the home should also be immunized to reduce the risk of becoming sick and spreading viruses to your child with arthritis. Regularly disinfect household surfaces such as doorknobs and faucets that can harbor germs. Teach your child to wash her hands frequently and not to share food or drinks with friends who may be sick. If you notice your child is showing signs of infection – a cough, sore throat or fever, for example – continue to give her arthritis medications. If an infection persists or you child is getting sick more frequently, speak to her rheumatologist.
Q: What kinds of medications will my child need to take? Are there any harmful side effects?
A: The specific medications your child will take depends on a number of factors including the type of arthritis she has, its severity and how well it responds to treatment (not responding to one type of treatment will require treatment with another).
In general, treatment may include:
All drugs carry the risk of side effects. Depending on the specific drugs your child is taking, these side effects may include upset stomach and increased risk for infections. Your doctor will let you know what to watch for and what to do if your child experiences side effects.
In general, treatment may include:
- Nonsteroidal anti-inflammatory drugs, including pain and inflammation relievers like ibuprofen or naproxen.
- Corticosteroids, potent inflammation fighters such as prednisone or prednisolone. These are generally used to manage the disease until other medications start working.
- Disease-modifying anti-rheumatic drugs (DMARDs), or drugs that modify the course of the disease such as methotrexate or sulfasalazine.
- Biologic agents, a type of disease-modifying drug that is genetically engineered from living organisms – such as a virus, gene or protein – to interfere with specific cells and pathways in the immune system.
All drugs carry the risk of side effects. Depending on the specific drugs your child is taking, these side effects may include upset stomach and increased risk for infections. Your doctor will let you know what to watch for and what to do if your child experiences side effects.
Q: Will my child ever “grow out” of arthritis?
A: JA comes in different forms, some of which are likely to persist into adulthood. In fact, approximately 50 percent of children diagnosed with juvenile idiopathic arthritis or JIA (meaning their symptoms start before age 16) will continue to require treatment into their adult years, says Dr. Rouster-Stevens. While doctors can’t say with certainty which children will have disease that requires treatment long term, they do know that controlling the disease can help reduce the risk of permanent joint damage.
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