Almost 300,000 American kids – one in 250 – under the age of 18 have juvenile arthritis. Adults, as they age, understand that arthritis may become a reality. But it’s not something that a kid expects, much less understands, and children are often ill-equipped to cope with the severe physical and emotional impact of the disease. It’s a very distressing diagnosis, for both the young person and their family.
Most commonly, juvenile arthritis is “idiopathic,” meaning its causes are unknown; in fact, the condition is formally known as JIA. It’s an autoimmune disorder – for some reason, the immune system attacks healthy cells and tissues. Researchers think that there is a genetic component which makes some children more susceptible to environmental factors, including viruses, which can set off the attacks.
Making an accurate diagnosis and determining how generalized the condition is can be difficult, says Dr. Alastair Kennedy, a Vero Beach rheumatologist. “It may affect only a single joint, or it could be systemic, and potentially affect every organ system, including the eyes,” he says.
The most obvious symptoms of JIA are pain, stiffness and swelling, typically in the knees, hands and feet. However, there are other signs one might not associate with arthritis that parents should be aware of – a limp, particularly after sleeping; excessive clumsiness; fever; swollen lymph nodes; and skin rash.
If these signs exist, the child should be seen by a pediatrician; he or she will ask about the child’s symptoms, conduct a physical exam, take a family history, order lab tests and perhaps an X-Ray.
If a diagnosis of JIA is made, the condition is best treated and monitored by a healthcare team headed by a pediatric rheumatologist and a rheumatology nurse (JIA is sometimes referred to as JRA—juvenile rheumatoid arthritis).
Treatment plans center on medications, with nonsteroidal anti-inflammatory drugs (NSAIDs) often being the first tried. Ibuprofen and naproxen are in this category of drugs; they reduce inflammation and pain, and help “calm down” the disease. Dr. Kennedy agrees that this is often a reasonable approach, but says some cases require more aggressive treatment from the outset.
If NSAIDs don’t adequately relieve symptoms, disease-modifying anti-rheumatic drugs may be prescribed, most commonly methotrexate. These drugs slow or stop the progression of the disease, but as it may take weeks or even months for them to relieve symptoms, they are often prescribed to be taken along with NSAIDs. In higher doses, methotrexate can be used as chemotherapy; this is something parents should be aware of and discuss with the child’s rheumatologist if this treatment is being considered.
Usually only the most severe cases of JIA are treated by corticosteroids. These drugs can reduce serious symptoms (for example, an inflammation of the sac around the heart), but the side effects can be significant – inhibited growth, weakened bones, weight gain and increased susceptibility to infections.
Dr. Kennedy spoke of biologic agents, a newer class of drugs for the treatment of JIA; he feels they represent a real improvement in the options available to parents. As the name implies, biologics are made from active biological material, rather than chemical compounds. Many of these drugs act in a way similar to human antibodies and can target the parts of the immune system that cause inflammation.
Surgery is very rarely indicated for juvenile arthritis.
A team approach for medical management is widely accepted as being in the best interest of patients in general; for kids with juvenile arthritis, it’s essential. Depending on the child’s individual situation, the team might include:
• Counselor or psychologist, to help with the emotional and social issues that can affect kids with juvenile arthritis.
• Physical and/or occupational therapist. On the related topic of exercise, Dr. Kennedy says “Once the disease is well-controlled, some types of exercise, like swimming, are good.” He says that biking is better than running, and that kids with JIA should not participate in contact sports.
• Dietitian. More on possible diet approaches later in this article.
• Pharmacist. Building a relationship with a local pharmacist who is aware of all the medications being taken by the child can be of enormous help; parents should make a point of keeping the pharmacist apprised of their child’s condition.
• School nurse. An important part of the healthcare community, the school nurse can provide insights into what happens during the school day, some of which the child may be reluctant to share with their parents.
An ophthalmologist is another important part of the team. Eye inflammation is a complication of JIA, and sometimes occurs with no symptoms, so regular eye exams are a must.
Dr. Kennedy endorses the team approach and sees the school as being an integral part; he says, “Parents can miss things that school staff will pick up on.” The school’s active involvement can make it easier for kids to attend physical therapy; considerations can be made for late arrival or early dismissal, and school nurses can often help with logistics.
Besides providing the best medical care possible, parents and grandparents want to know how they can help their child. Here is some guidance from the National Institutes of Health (NIH), the agency of the U.S. government responsible for biomedical and health-related research:
• Learn as much as you can about JIA and its treatment.
• Insist that your child take the prescribed treatment.
• Consider joining a support group.
• Treat your child as normally as possible.
• Encourage appropriate exercise and physical therapy for your child.
• Work closely with your child’s school.
• Talk with your child.
There is a syndrome with an inelegant name that parents of JIA sufferers should be aware of – the leaky gut. Many researchers believe that achieving microbial balance in the gastrointestinal tract is essential to managing symptoms – not just of JIA, but of other autoimmune diseases like adult rheumatoid arthritis and multiple sclerosis.
One approach is to add probiotics to the diet – either in foods which come by it naturally, like yogurt and fermented teas, or via supplements. Probiotics provide “good bacteria” and are known to keep a healthy balance in the gut and boost the immune system. Dr. Kennedy says he is “favorably inclined” to adding probiotics to the child’s diet, but not as the sole treatment.
There are members of the medical community that endorse a gluten-free diet to ease symptoms of JIA. The diet excludes grains such as wheat, barley, and rye. The diet is not as restrictive as it used to be, as many foods now come in gluten-free forms, including foods that most kids like – pasta, bread, soup, cookies and crackers. There are also many foods that are naturally gluten-free: meat and poultry, fish and seafood, eggs and dairy, fruits, vegetables, beans, legumes and nuts.
There is no proof that going gluten-free will help kids with juvenile arthritis. Dr. Kennedy says, “These types of things go in and out of fashion. Doctors need to be somewhat skeptical.” Still, he says there is nothing harmful about a gluten-free diet, and it worth discussing with the child’s doctor.
“An accurate diagnosis, prompt treatment, and physical therapy are essential,” Dr. Kennedy says. “Many of these kids used to end up on full bed rest. The outcome is so much better now.”
Dr. Kennedy ran the Juvenile Rheumatoid Arthritis clinic at the University of Buffalo, but no longer treats children with the condition. His office is at 1300 36th St # 1A, in Vero Beach; the office phone is 772-569 8550.
