New treatment offers hope to kids with juvenile arthritis



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Posted on July 16, 2011 at 10:00 AM

Updated Saturday, Jul 16 at 11:17 AM

"Good throw. He does have a good throw," said seven year old Indy Pinney's parents as they watched him toss a frisbee.

They are especially proud of that throw, and his running, even when his dog Sandy wins the frisbee game. It's a remarkable change from his life three years ago.

"He did not want to run. He did not want to have to walk fast. He complained that it hurt," recalled his mother Shawna Pinney.

At first Indy's symptoms confused his parents and his pediatrician.

"His knees were unusually large. But he was also very skinny," said Pinney.

It wasn't until months later, that Indy was diagnosed at Seattle Children's. He had severe juvenile arthritis. The disease inflames joints, and destroys bone, crippling young victims. It was all through his body.

"Forty seven joints that were active with arthritis," said Pinney.

"He had pretty awful disease. He had terrible disease," recalled Seattle Children's Pediatric Rheumatologist Dr. Carol Wallace.

She said juvenile arthritis is hard to diagnose in kids because it mimics other conditions.

"They're limping, they have a swollen joint. Maybe they have joint pain. They could also present with high spiking fevers and rash," explained Dr. Wallace.

She led a national study in hopes children like Indy would benefit from early aggressive treatment. Researchers compared combinations of methotrexate, Enbrel, and prednisone. Though not perfect, the treatments proved promising for kids.

"You can actually get them to a state of completely inactive disease by six months. And we were very pleased that we were able to do that in over a third of the children. It was just very exciting," said Dr. Wallace. 

The children must be carefully monitored because the drugs have potential negative health consequences, including risk of cancer. But juvenile arthritis can cripple a child.

"And how do you balance the potential for some rare side effect ten years down the road twenty years down the road versus getting destroyed joints in the next five to ten years?" Dr. Wallace explained the dilemma of families.

For Indy's parents it came down to this.
"We wanted him to be better. We wanted him to experience a normal childhood," said Shawna Pinney.

Now, with his medications, that normal childhood is within reach for Indy.

The researchers have started a national registry to track children on all arthritis medications. They hope the registry will yield answers that improve care in the future.