Does not mean life in a wheelchair
In 2007, a federal study showed that approximately 294,000 children under the age of 18 had been diagnosed with “arthritis or another rheumatologic condition.”
Arthritis, in those under 16, has been clinically referred to as juvenile rheumatoid arthritis, juvenile chronic arthritis and, more recently, juvenile idiopathic arthritis. These clinical classification schemes, according to the Centers of Disease Control, do not include “many of the conditions considered as part of the larger rubric of arthritis and other rheumatic conditions in adults.”
Many people may be unaware of the fact that arthritis is a disease that affects the young, and that July is Juvenile Arthritis Awareness Month, but not Dr. Deborah Rothman.
“The classic sign of JIA is morning stiffness,” said Rothman, director of pediatrics and rheumatology at Shriners Hospitals for Children in Springfield. “Parents tell me their children may refuse to walk when they first wake up, but after a warm bath they may start to move.”
JIA can be diagnosed in children even younger than 1 year, but pediatric rheumatologists tend not to see kids until they are a little older, when they start to walk and it becomes obvious that the child is limping.
There are several main subtypes of arthritis under the umbrella term, but all types are said to involve at least one joint, meaning joint swelling and/or pain and limitation of motion.
Rothman said she sometimes sees patients after they have suffered symptoms of JIA for some time.
“I still get patients referred who have had active arthritis for many months before they were referred,” Rothman said. “There is a critical shortage of pediatric rheumatologists, and a lack of pediatric rheumatology teaching in medical schools, so many people aren’t aware that children can get arthritis.”
While there are practicing pediatric rheumatologists affiliated with Springfield’s medical centers, Rothman noted that “about 10 percent of states do not have a pediatric rheumatologist.”
Rothman said there have been tremendous advances in the treatment of the several types of JIA over the last 15 years, with the development of more effective medications called biologics.
“With the new medications, many children are in clinical remission and able to do everything they want,” she said. “We have patients with JIA competing in college athletic programs and a few dancers on scholarships.”
A JIA diagnosis does not mean a child’s life necessarily needs to be severely limited.
JointsC2“Diagnosis does not mean a life in a wheelchair,” Rothman said. “There are no children in wheelchairs in our clinic at Shriners. With early diagnosis and therapy, most children can do very well. There are a small number of children who do not do well and more research is needed for those whose disease does not respond well to current therapies.”
Treatment may include medications that are given by mouth, as injections, into the bloodstream, directly into a joint, and physical and occupational therapy.
In addition to medications, there are other ways to increase quality of life for JIA patients.
“Regular exercise is very helpful,” Rothman said. “It used to be thought that you had to rest the inflamed joints, but we know now that the more kids move, the better they do. Obviously, nothing should ever be painful.”
Swimming is usually a great form of exercise, and biking is a possibility for some patients.
“We work with families to find an exercise that works for them,” Rothman said. “Maintaining a normal weight also helps because obesity puts more pressure on inflamed joints.”
While JIA can go into remission, most children require long-term medication.
Children with JIA can develop uveitis, an eye condition seen in up to 20 percent of children with JIA. Uveitis is inflammation of the anterior portion of the eye and, untreated, can lead to permanent blindness. All children with JIA need to see a pediatric ophthalmologist on a regular basis to screen for uveitis.
Many of Shriners Hospital’s JIA patients have to get blood tests, have intravenous therapy and undergoing procedure, so the staff tries to make appointments less scary.
“We have child life specialists who work with the kids to distract them with all sorts of toys and videos. And every child who has to get a blood draw, IV or undergo a procedure gets a prize. We also try to give children choices when possible, so they feel like they have some control over what’s going on,” she said. “That can make a huge difference for some of these kids. And, of course, we use all kinds of numbing medicine so often they cannot even feel the needle.”
Shriners Hospital for Children participates in CARRA, the Childhood Arthritis and Rheumatology Research Alliance, which consists of nearly all pediatric rheumatologists in the United States. CARRA conducts research studies and has a registry with a goal of enrolling all children with rheumatic diseases, so they can be followed long-term.
“Shriners has a long history of providing pediatric rheumatology services to children,” Rothman said.
Parents are advised to be aware of the major signs of childhood arthritis, which can affect children at any age.
“If your child has swollen joints, you should take your child to your pediatrician first. There can be many causes of joint swelling besides arthritis and your pediatrician can help decide if your child needs to see a pediatric rheumatologist,” Rothman said.
More information is available online at http://www.cdc.gov/arthritis/basics/childhood.htm