Baby Steps

Children with arthritis can lead active lives

Therapy Times—July 6, 2009

For parents with children who complain of joint pain, arthritis is not a typical first guess as to the root of the problem. However, it can - and does - happen, even to otherwise healthy kids. Juvenile rheumatoid arthritis is an often-overlooked reason for discomfort and aches in the joints of young children.

"A lot of parents are not aware that children can get arthritis," says Emma Jane MacDermott, MD, pediatric rheumatologist at Hospital for Special Surgery in New York, "and so when the child is limping or complaining of a swollen joint, the first thing they think of - and probably appropriately - is injury."

However, arthritis that is allowed to progress unchecked without appropriate diagnosis and treatment can lead to significant problems in the future due to the delicate nature of children’s still-growing bones.

"In children you've got the double-edged sword of having permanent joint damage and having inflammation in growing bones," MacDermott says. "When a joint is inflamed, and when there's arthritis in a joint, it causes an increase in blood flow to the area. Sometimes they get a leg length discrepancy; sometimes they get excess growth in the joint that's affected."

Luckily for parents, there are a few minimally invasive options available for a child with a positive diagnosis of arthritis as medicine advances to meet the need for treatment.

MacDermott says she usually uses biologic drugs, such as Enbrel and Humira, as second-line agents. In the past 10 years, these tumor necrosis factor (TNF) inhibitors have been FDA-approved for treating rheumatoid arthritis in children and adults. Anti-TNFs are more aggressive treatments, but are immunosuppressants that heighten the risk of infection.

"The anti-TNFs have really changed the face of arthritis and have made these children get so much better so much quicker," MacDermott says. "Patients who are severely debilitative and needing to have prolonged stays at rehab facilities should be a thing of the past."

A diagnosis of childhood rheumatoid arthritis is serious and life-changing, but it is no longer the activity-limiter that it once was thanks to the new treatments and rehabilitation options.

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Corinne McCarthy, PT, DPT, MS, is a pediatric physical therapist at HSS, and she has two of MacDermott's JA patients on her current caseload. She works closely with the rheumatologist as well as the patient's pediatrician, orthopedist, and occupational therapist to achieve a multidisciplinary team approach to treatment. Physical therapy sessions for JA mostly consist of exercises and activities that work on active range of motion.

"Sometimes you'll do some active-assistive range of motion, but you really don't want to push the joint," McCarthy says. "You want to let the child gently work through the range that they have available to them.”

In addition to aerobic exercises, McCarthy says that stretching in the swimming pool are some of the best treatments for JA patients.

"Swimming in the pool is one of the best things you can do because it allows for easier movement," she says. "You get the whole systemic approach with the buoyancy, allowing the body to float a little bit easier, and the warm water makes the joints feel better. A lot of our kids will do a swimming program in addition to coming here."

Other than maintaining a level of motion and comfort, an important goal of physical therapy for sufferers of JA is making sure the children are able to physically keep with their peers.

"You have to set up the treatment plan based on where they are in their state of [JA], whether everything is even keel or they're in a flare-up stage," McCarthy says.

There are no known triggers for flare-ups, so being active is often recommended to JA patients, though McCarthy stresses that low-impact aerobic exercises are the way to go.

"A lot of the kids here in the city are relatively competitive and don't like to be told they can't do things," she says. "So you have to try to find some low-impact stuff like tai chi or kids’ yoga or joining a swimming program or a team."

While the general treatments for JA are the same for patients of any age, the method of doing the exercises and stretching can be modified.

"With older kids, you can go straight for the rest, ice, compression, and elevation to reduce that acute swelling and inflammation, and they'll let you do straightforward exercise or massage or splinting for those swollen painful joints," McCarthy says.

For younger children, however, she says she tries to create games and distractions to make the therapy sessions more enjoyable.

"Say a child has a knee that's affected. Instead of just having them sitting on the bench working on actively bending and straightening, I'll have them kicking a lightweight ball in order to get them to straighten their knee out all the way or bend it all the way," McCarthy explains.

"Or I'll put them up on a big physio ball and pretend that we're swimming in the water, and I'll have them go through active kicking. You can set up a light obstacle course or have them go across the balance beam or 'wade through the jungle.' If I'm working on the stairs to get more knee flexion or hip range of motion, I'll have all the puzzle pieces on the bottom and make them go up to the top to put them in."

McCarthy says JA patients are typically discharged from physical therapy once they have achieved as high a functional level as possible and are able to keep up with their peers in age-appropriate milestones, such as negotiating stairs, running and dressing themselves. Therapists can send parents home with exercises they can do with their children to maintain that range of motion and independence.

MacDermott has seen many patients become normal, fully functional adults, and occasionally, extraordinarily successful people.

"For the most part, our children are going to college, getting married, doing whatever jobs they want," she says. "We have people getting sports scholarships to university and people dancing professionally and playing in professional sporting activities - taking part in strenuous active lives. Sure, they take their medicine, and they follow up with their doctors, but they're doing everything they want to do."

The ones that do best, she says, are ones that are compliant with their treatments and keep up with their doctor's visits, because the doctors and therapists can see them and treat them when problems first arise, not when things become critical or they become severely unwell.

"When parents are shocked by this diagnosis of childhood arthritis, and they think that their child is going to end up looking like the older people they see, it's important for them to know that the face of arthritis has changed greatly," MacDermott says. "Children are doing very well. They're doing everything they want to be doing.”

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