FAQs - For Parents

1. Would my child have autoimmune disease if it runs in the family?
2. My child has positive ANA, does that mean it is lupus? Or Arthritis?
3. What should I worry about with my child and rheumatology doctors?
4. What is childhood arthritis?
5. What causes arthritis?
6. How is it treated?
7. Why does my child need frequent eye exams?
8. How often does he need to see the doctor?
9. What should I tell his teacher at school? Does he need special treatment at school?
10. How should we explain his condition to family and friends? What resources are there for families?
11. Will this affect his ability to participate in sports? Should he avoid any activities? What sports or exercise will benefit him?
12. Does he need a special diet?

 

1. Would my child have autoimmune disease if it runs in the family?
   1. Not necessarily…yes it is true that some autoimmune diseases can run in the family; those include lupus, thyroid disease, diabetes, ankylosing spondylitis, psoriasis and inflammatory bowel disease. However, the genetics of autoimmune diseases are very complex and involve multiple genes. Furthermore, it is believed that triggering of autoimmune disease need exposure to some (largely unknown) environmental influences that could be a viral illness or stress.
2. My child has positive ANA, does that mean it is lupus? Or Arthritis?
   1. ANA is commonly checked as screening test to see if the child has autoimmune disease. Although ANA is a good screening test for lupus, there has to be a clinical relevance for results to be helpful. ANA is not a good screening test for arthritis. ANA can be positive among completely healthy children in 15-17% of the time. If you have 100 children side by side and run ANA test on blood samples, 1 out of 5 children will have positive ANA.
3. What should I worry about with my child and rheumatology doctors?
   1. Fever is the #1 emergency in pediatric rheumatology; this is because of the medications that your child is on such as biological response modifiers, DMARDS, or steroids.
   2. Please keep a diary of fever and record every medicine that you give including Tylenol or Motrin.
4. What is childhood arthritis?
   1. The prevalence of JIA is about 6 in 10,000 children. Juvenile Idiopathic Arthritis is an abnormality in the body’s immune system that causes inflammation of the joints. Some common symptoms of juvenile rheumatoid arthritis include fatigue, stiffness or pain (which is usually worse after sleep), and joint swelling. Even though these are the common symptoms, juvenile idiopathic arthritis affects each child differently and each child has a different reaction to drugs. The diagnosis of juvenile idiopathic arthritis is based on physical examination findings, laboratory test, and active arthritis in one or more joints for at least six weeks. There is no laboratory test that diagnose juvenile rheumatoid arthritis but some help assist in the diagnosis.
5. What causes arthritis?
   1. So what is arthritis? “Arth” means joints and “itis” means inflammation and by putting those two words together you would get arthritis which means inflammation in the joints. There are five types of juvenile arthritis, which include: juvenile idiopathic arthritis, spondyloarthropathies, psoriatic arthritis, dermatomyositis, and vasculitis. JRA is classified as an autoimmunity disease. Autoimmunity is when your immune system starts attacking your own cells as if they were infections. No one knows why the immune system attacks itself but scientists believe that your genes or a combination of genes and the environment may have something to do with it.
6. How is it treated?
   1. When treating juvenile idiopathic arthritis some of the goals include relieving pain, controlling inflammation, preventing joint damage, and maximizing daily functions. The treatment program will include medications, eye care, dental care, exercise, and proper nutrition. In some rare cases, surgery is needed.
   2. There are three different main classifications for medications in rheumatology, which include NSAIDs (Nonsteroidal anti-inflammatory drugs), DMARDs (Disease-modifying anti-inflammatory drugs), and biologic agents.
   3. NSAIDs are used are the initial therapy for juvenile arthritis and sometimes are taken for at least six to eight weeks to see if it helps control inflammation. Some common NSAIDs are ibuprofen and naproxen. Not every child responds to each NSAID the same and sometimes physicians may have to try more than one to see which one works best for your child. For most of these drugs, the most common side effects include vomiting, anemia, nausea, stomach pain, decreased kidney function, headache, fragility, scarring of the skin (especially with naproxen), severe abdominal pain from stomach ulcers, and difficulty concentrating.
   4. The second type of medication is DMARDs, which are known for preventing joint damage. DMARDs are often used with NSAIDs to help with joint pain and damage. All children that are on DMARDs should have regular laboratory test to monitor toxicity. The most commonly used DMARDs is methotrexate. Methotrexate is given once a week in either the pill form or injection. Injections are more effective because most of the medicine will get into their system unlike with the pills. Because methotrexate is given in low doses there are few serious side effects. Some side effects include vomiting, mouth sores, nausea, diarrhea, low white blood cell count, and liver irritation. Anyone on methotrexate has a higher risk of getting an infection and they should not take any live vaccinessuch as chicken pox or measles. Methotrexate has been used for over fifteen years and has had a very successful. There are more potent DMARDs such as Cytoxan, Cellcept, Cyclosporine, and Imuran. These treatments are used when there is systemic autoimmune disease such as lupus.
   5. Steroids are reserved for use when there are limited choices. They are mostly used when the other drugs (NSAIDs and DMARDs) were not successful. These drugs can be given by pill, liquid, through a vein (I.V.), or injection into the joint. With steroids, injections in the joint directly are the most effective and cause the least amount of side effects that may be associated with oral or I.V. doses. Some of those possible side effects include high blood pressure, Cushing’s syndrome, cataracts, slowed growth, osteoporosis, mood swings, increased appetite, and increased risk for ulcers. Cushing’s syndrome consists of symptoms such as weight gain, thin skin, muscle weakness, moon face, and brittle bones. Like other medications, children taking corticosteroids should not get live vaccines but they should take supplements such as calcium and vitamin D. Also, these children should wear a medical alert bracelet or necklace in the event of an emergency operation that may need to be given after a serious injury.
   6. Plaquenil, which is also known as hydroxychloroquine is given in pills to control swelling and joint pain, is not a true DMARD. Plaquenil is used in children with mild cases of arthritis and sometimes combined with methotrexate. This therapy is standard in systemic lupus erythematosus (lupus) and juvenile dermatomyositis patients. Some side effects of plaquenil include diarrhea, skin rash, upset stomach and rarely eye changes may occur.
   7. There are four main biologic agents (biologic response modifiers – BRMs). These BRMs include Enbrel (etanercept), Kineret (anakinra), Remicade (infliximab), Humira (adalimumab), and Orencia (abatacept).
7. Why does my child need frequent eye exams?
   1. Another part of treatment for JIA includes eye care. Inflammation of the eye (uveitis) is very common in JIA. Chronic uveitis is most common in young girls with a positive antinuclear antibody (ANA). Uveitis mainly occurs in the first three to five years after being diagnosed with JIA but it has been reported to occur thirty years after being diagnosed. For that reason it is very important that every child with JIA has frequent visits to their ophthalmologist. The degree of active arthritis has no impact on your development of uveitis but the frequency of visits to your eye doctor depends on the published guidelines made by pediatric rheumatologists and ophthalmologists. At WRNMMC and Fort Belvoir, there are close collaborations between rheumatology and ophthalmology. Multi-disciplinary clinics days are available at both sites where you can see both specialtiesA branch of medicine or surgery that a doctor specializes in. on the same day.
8. How often does he need to see the doctor?
   1. This answer depends on the patient, severity of disease, and amount of symptoms (like morning stiffness, joint pain, swelling). Please consult your pediatric rheumatologist about your treatment plan.
9. What should I tell his teacher at school? Does he need special treatment at school?
   1. Please consult your primary care doctor and local school about Individual Education Plan (IEP). The American Juvenile Arthritis Organization (AJAO) helps families with networking and educational opportunities through national and regional juvenile arthritis family conferences. AJAO also helps educate teachers and school administrators about JIA. CARRAgroup.org is also another resource for families.
10. How should we explain his condition to family and friends? What resources are there for families?
    1. There are other ways families that have a child may receive help. For one, there are federal laws that prohibit a child from being discriminated because of their disabilities.
    2. Secondly, there are plenty of books that have been written to help parents that have a child with JIA. Some of those books include Raising a Child with Arthritis: A Parent’s Guide, Kids Get Arthritis Too, and When Your Student Has Arthritis.
    3. Thirdly, there is financial assistance to persons with disabilities that are in low-income situations. Some ways to receive some financial assistance is through the Social Security Administration (SSA), Supplemental Security Income (SSI), and Medicaid.
    4. Medical social workers are available at doctor’s office and they can help and give strategies to how a family should deal with chronic medical conditions.
11. Will this affect his ability to participate in sports? Should he avoid any activities? What sports or exercise will benefit him?
    1. Exercise helps patients keep their joints mobile and muscles strong while regaining lost motion. Exercise will also help make everyday activities such as walking and getting dress easier. The only solution to restore lost motion in a joint is therapeutic exercise. Each type of exercises helps build and strengthen different parts of the body. Range of motion exercises keeps joints flexible while strengthening exercises build muscle endurance and strength. Physical or occupational therapist teaches children and their families how to perform these exercises on a daily basis at home.
    2. Another type of exercise that is important for children is recreational and sports activities. These activities will help develop important social skills, exercise joints and muscles, and they will have fun. The best exercises for children with arthritis are water exercising such as swimming and bike riding. Some activities that are not recommended for children with arthritis include jogging and playing on the trampoline.
12. Does he need a special diet?
    1. Children with juvenile idiopathic arthritis may have a poor appetite, which will lead to weight loss and poor growth. On the other hand, patients on corticosteroids could have an increased appetite that will usually cause them to gain weight. Children with juvenile idiopathic arthritis and TMJ involvement may feel too sick or have too much pain when eating and chewing which is one reason that may cause them to lose weight. It is extremely important for parents to encourage their children to eat a well-balanced diet, planned snacks, and have additional calcium and vitamin D to help strengthen their bones.
    2. On the other hand, patients with juvenile idiopathic arthritis may gain too much weight because of a side effect of corticosteroid. More weight puts more stress on the joints like the knees, ankles, and hips, which could cause more pain. For that reason, it is important that all children with juvenile idiopathic arthritis maintain a normal body weight by eating a well-balanced diet and getting plenty of exercise.