Beating arthritis a baby step at a time

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Beating arthritis a baby step at a time

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Babnik III charges across the living room. His 3-year-old legs pound

the carpet as he collides against his father. Babnik II grabs his son

and tickles him until the giggling boy escapes to play with the Tank

Engine.

It's hard to believe that, one year ago, the Glencoe toddler begged to be

carried everywhere because his arthritis made it too painful to walk. His

legs worked, but they hurt, so whenever his parents put him down on the

floor, just stayed there.

The small Babnik (often called - by his family) is one of

300,000 children in the United States with juvenile rheumatoid arthritis

(JRA). Like most people, and Marielle Babnik thought arthritis was an

" old people's disease " until - was diagnosed at 18 months.

Marielle Babnik was flabbergasted by her son's diagnosis.

" I was thinking, 'There's no way this is possible. It's just too crazy,' "

she said. After a second opinion confirmed the arthritis, the Babniks

realized how lucky they were to discover it quickly. They are immensely

grateful to pediatrician Judy Knight of Glencoe for catching the disease so

early, because it's essential that children who have arthritis get proper

treatment during their growing years.

Enjoying remission

While some kids grow out of JRA, many don't.

However, a 20-year revolution in JRA treatment has significantly improved

quality of life for the patients, including Babnik. After nine months

of trial and error, pediatric rheumatologist Marissa Klein-Gitelman hit upon

a drug therapy for - that is, for now, anyway, working.

This year, the child runs and plays like any other 3-year-old boy.

-'s apparent remission may be temporary, but it's been a relief to

his parents and 5-year-old sister Maddie.

Rheumatoid arthritis is an autoimmune disease causing inflammation of the

soft tissue lining the joints. People with arthritis have pain, swelling,

tenderness and stiffness. The disease can lead to permanent damage if left

untreated, especially in kids.

" Children are growing, so the inflammation not only affects the joints, as

it would in an adult, but these kids have growth plates, and the increased

blood flow and increased inflammation (in their joints) causes those growth

plates to function differently, " said Dr. Klein-Gitelman, of Children's

Memorial Hospital.

The extra blood flow to affected joints signals the growth plates to start

growing too early.

" So you have wider bones that start growing faster and earlier, "

Klein-Gitelman said. " The whole architecture of the joint changes and it can

cause a lifetime of problems, even if the arthritis goes away. "

After two of -'s fingers swelled up when he was 18 months old, he

was diagnosed with pauciarticular JRA, meaning four or fewer joints are

affected. But by last summer, the arthritis had progressed to his knees and

ankles, giving him the more serious diagnosis of polyarticular JRA.

" It got to the point where he would not stand up in his crib in the

morning, " Marielle Babnik said. " He would tell us his legs hurt and his

knees hurt. "

The Babniks remember trying to keep - moving during the worst of his

symptoms, since it's important for those with arthritis to use their joints.

The Babniks' strategy was to try and get their son to walk to the park.

Instead, he would stand out on the sidewalk and scream.

" It was a fight to get to that stop sign, " Babnik said, pointing

outside to the corner their house sits on.

Marielle Babnik quit her executive-level job to coordinate the boy's care

and provide a sense of normalcy for Maddie and -. She can't believe

how much her son has improved over the last year.

" This child would not walk to the corner, " she said. " Now he runs to the

park. "

Improving treatments

Before the advent of modern drugs, many children with multiple joint

arthritis would end up much smaller than they would otherwise be.

" That got exacerbated by some of the old-time drugs we used to use, like

prednisone, " Klein-Gitelman said. That particular drug inhibits growth.

The big shift in JRA treatment started in the mid-1980s, Klein-Gitelman

said. That's when researchers discovered that methotrexate, a drug used to

treat cancer, was also effective in regulating the immune system's unhealthy

arthritis response. Then, 10 years later came the tumor necrosis factor

(TNF) inhibitors, which block an immune hormone that causes inflammation.

" These drugs all have the same effect of decreasing the signal so there

isn't as much inflammation, " Klein-Gitelman said. " They have definitely made

a change in how people with arthritis, young and old, feel. They've gotten

people out of wheelchairs. "

Weekly methotrexate injections have made a major difference in 's

arthritis, although when Marielle Babnik cried the first few times she had

to give them to her son. The Babniks soon turned the shots into a family

affair and now it's a routine.

" Daddy holds him down, Mommy gives him the shot, and Maddie puts a Band-Aid

on him when it's all over, " Marielle Babnik said.

But besides undergoing carefully calibrated multiple drug therapies,

children with arthritis still need to use their joints. Some undergo

physical and occupational therapy, while others with milder cases just stay

active playing soccer, basketball and swimming.

" I have kids in every sport, " Klein-Gitelman said, sounding proud.

- keeps active at home, clamoring to go to the beach or the park.

Yet he continues to see a physical therapist and, when prompted by his

parents, practices squats at home. When he sits on the floor, he stretches

his legs straight out in front of him as he's been taught.

" We need to work on building his strength, " Marielle Babnik said.

Though is doing well now, his parents know the pain could come back at

any time. Marielle Babnik notes that her son recently complained his knees h

urt after returning from a long day at the zoo.

" Probably because he was sitting too long, " she added quickly.

Future hope

The Babniks' friends and family were so shocked last year by 's

diagnosis that they raised $14,000 for the Arthritis Foundation's Chicago

Arthritis Walk, making them the largest fundraiser in the state. Young

Babnik is actually the honoree for this year's walk, and his parents are

gung-ho about raising more money for research.

" I know everybody has his own cause, but one in three Americans have some

form of arthritis, " said Babnik, who's seen several family members

endure the pain of severe arthritis. His son's diagnosis has changed his own

priorities.

" I played hockey when I was a kid and I played hockey in college, so I just

assumed my kid was going to play it, " he said. " But if can just run

without pain, that's fine. He doesn't have to play hockey. "

On this day, though, it's clear that Babnik III is up for just about

anything. The boy begs his father to throw him a basketball, and when

somebody mentions a walk, his ears perk up.

" I want to go for a walk, " he chants. " I want to go for a walk. "