Most of the time, when children get sick or injured, their problems are obvious. But sometimes children have problems that are subtle and insidious. Arthritis is one such disease. My associate, Deborah Schwartz, recently spent an evening with a Children's Hospital arthritis patient. Her report:

Beryl Hurwitch was almost 5 when she began crawling into her parents' room in the morning, and bumping down the stairs instead of walking. Her left knee was stiff and swollen.

Beryl never had complained of being in pain. But one morning when her mother, Susan, was getting Beryl ready for school, she noticed how swollen Beryl's knee was. And when Susan touched it, the knee felt hot.

Susan Hurwitch figured Beryl had hurt herself. But the problem was much more serious. Beryl was diagnosed with juvenile rheumatoid arthritis (JRA).

Her pediatrician recommended Children's Hospital because he felt a specialist should see Beryl and the hospital has a comprehensive rheumatology department. Beryl has been a Children's regular for two years.

When you first see Beryl, she looks like a normal 6-year-old. Her straight brown hair is styled in a pixie, and she runs and tumbles around the family room of the Hurwitch home in Herndon. That's on a good day. On a bad day her joints are stiff, and it's hard for her to get moving.

"At school, because of my arthritis I can't climb things," said Beryl. "Sometimes my friend on the balance beam helps me get up and stuff."

"Looking at Beryl sometimes is like watching how an older person {with arthritis} might function," said Susan Hurwitch.

There are three forms of JRA, a chronic disease that affects one or many joints. The joints become inflamed, causing heat, pain, swelling and stiffness. JRA is the second most common chronic disease in children. Diabetes is the first.

Pauciarticular JRA usually shows up in children ages 2 to 6. Patients with this form of JRA have the best prognosis because the disease affects the fewest joints, and patients tend to have less inflammation. Knees, ankles and wrists are the most commonly affected joints. About half of this group develop eye inflammation, too, which is not painful but can lead to blindness if not treated.

Polyarticular JRA affects many joints -- usually the small ones in the hands and fingers, and weight-bearing joints like the hips and knees. This form of JRA is seen more often in girls. These children tend to run fevers, suffer from fatigue and don't grow well.

In the most severe form of JRA -- systemic -- children frequently run high fevers and often have rashes. This form of the disease can affect the heart, lungs and other internal organs. This group is usually the most difficult to diagnose in the early stages. Joints aren't always involved at first in these children, but later on, many joints are involved.

Beryl was initially diagnosed with pauciarticular JRA but now shows signs of polyarticular JRA. Beryl's ankles, knees, toes, neck and some fingers are affected. However, the swelling isn't that noticeable in her hands. And when she is wearing pants, the swelling in her knees isn't noticeable.

Generally, rheumatoid arthritis in children is less crippling than when it affects adolescents or adults. The chance of recovery is also much better in children.

By the time JRA victims are in their 20s, about 75 percent of them look completely normal. The other 25 percent suffer some crippling effects. Ten percent are severely affected.

"Most people think of {arthritis} as an old person's disease and you don't think of 2- and 3- and 5-year-olds having crippling arthritis," said Dr. Robert Lipnick, Beryl's rheumatologist at Children's.

"Not only in the lay population but within the medical sphere there are people -- family practitioners, generalists in particular, but occasionally even some pediatricians -- who didn't think about it because they didn't realize the kids could {get arthritis}."

While most 6-year-olds run, jump rope, climb bars and ride their bikes, Beryl Hurwitch isn't able to. She can do some of these things with help. But Beryl tires more easily and often gives out before most 6-year-olds.

Her parents will still put her in a stroller on long walks because the combination of the pain and the fatigue overcome her. Beryl also requires more sleep than most children her age -- 11 or more hours a night.

To lessen the severity of the inflammation, many different drugs are used to treat JRA. Aspirin in large doses is usually the first remedy doctors try. But in Beryl's case, aspirin created severe gastritis and hepatitis and had to be abandoned.

The only drug Beryl now takes is naprosyn, a nonsteroidal anti-inflammatory drug. She also receives physical and occupational therapy and wears leg splints at night to help keep her joints from becoming fixed in one position.

"When I first heard arthritis, all you can think of is elderly {people with this disease}. You see your daughter in a wheelchair or crippled. That's all you can think about," said Jon Hurwitch, Beryl's father.

"First you go through, 'It's not my kid. It won't be there tomorrow or she's going to grow out of it.' Then you start finding out a little bit of information. And like anything else, a little bit of information is dangerous."

However, the Hurwitches have long since gone beyond little bits of information. They have become experts on JRA. They read everything they can find on the disease and have gotten involved with the American Juvenile Arthritis Organization.

Susan Hurwitch feels that it's important to educate others who have children with JRA.

"I'm really sympathetic to other families and I understand that a lot of people {find it} tough to deal with," said Susan Hurwitch. "For me it was {important} to get as much information as possible and to find a constructive way to deal with it.

"My realization was it isn't an illness that has a cure and a cure probably isn't going to be tomorrow. To me it was important to find out how I could constructively help her and one of the ways for me was public awareness.

"People just don't understand handicaps. They certainly don't understand arthritis. Arthritis really isn't a disease that you can see. A lot of people can look at her and say she looks fine and nobody understands that you have to see her at 5 in the morning and you have to see her trying to get out of bed."

Beryl makes the decision when she's going to participate in physical activities and when too much is too much. If she's hurting, it's up to her if she needs to slow down.

What lies ahead for Beryl? It is still too soon to say.

"She may be left with some residual deformity as a young adult," said Dr. Lipnick. "It's possible that she would have to wear some special shoe or it's possible that she would not be able to jog without some discomfort or perhaps a lot of discomfort. When she is a young adult it may cause her some limitation."

The bottom line is that there are no miracles when it comes to JRA. "In the last year and a half she's had times that have been pretty good," said Dr. Lipnick. "And she's had times that have been pretty horrible, too."


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