All Children's Hospital Telethon

Sami's Story - 2011 All Children's Hospital Telethon



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"Oh my gosh, it was HUGE,' mom says. "I immediately called in her daddy to look, saying-what's wrong with our baby?"

Two days and two doctors later, Sami and her family were at All Children's Hospital in St. Petersburg, going through MRI scans to see if the knee joint might be fluid-filled or infected.

"The doctor back in Sarasota was convinced she needed emergency surgery because of a possible sepsis infection in the joint," mom explains. "But here at All Children's, they took one look at Sami with no pain and no fever and said-this is probably just juvenile rheumatoid arthritis."

Of course, there's no "just" about what used to be called JRA, and is now called juvenile idiopathic arthritis.

In the nearly two years since Sami's MRI and diagnosis, arthritis attacked her fingers, neck and shoulders. It threatened her mobility-and even her eyesight. Sami's "saving grace," as mom puts it, is her team at All Children's Pediatric Rheumatology Program. "Our nurses Michelle (Brucker) and Norma (Liburd) are just amazing. I call them more than I care to admit, and they always get back to me within an hour. If I haven't heard from them by then, I can usually expect a call from Dr. (Robert) Nickeson that evening. Back when I was growing up, I don't think my mom ever got a call from our doctor. But that's just what's special about our team."

It takes a team to care for kids like Sami.

"Sami has been through a whole range of medications, from simple to complex," notes Robert Nickeson, M.D., Director of All Children's Pediatric Rheumatology Program.

"Not every child needs such a full range. But Sami developed an eye disease called uveitis that's associated with juvenile arthritis. And that really pushed us to get her on our most advanced drug therapy-which is given intravenously once a month in our Infusion Clinic."

Even the few people who know that kids can get arthritis are usually unaware that it can affect a child's sight. The tiny ligaments that hold the eye's lens in position behind the iris can become inflamed. If it's not caught early and treated, this can lead to scarring and visual loss. Luckily for Sami, the team knew that she would be at high risk for eye complications because she was young, female and had arthritis that was not systemic but affected multiple joints. "Centers like ours will automatically have patients visit an eye specialist for regular screening," Nickeson notes. "In kids like Sami, that screening takes place every three months-so we can catch the problem before serious damage is done. That's a great example of why it takes a team to care for these kids."

This spring, a new member was added to Sami's care team when she developed near-constant knee pain that put her back into a wheelchair. Drew Warnick, M.D., is a pediatric orthopedic surgeon and Director of the Pediatric Sports Medicine Program at All Children's. He says Sami was born with an abnormality in the meniscus cartilage in her knees.

"Usually, the meniscus is shaped like the letter 'c'," Warnick explains. "I tell parents it's a like a shock absorber. But Sami had what's called discoid meniscus, which is shaped like a disc. It doesn't distribute force across the bones in the joint like a regular meniscus. So it doesn't have those 'shock absorber' properties. It's more prone to tearing, popping and pain. "Sami's pain was compounded by the arthritis. So we decided to intervene with minimally-invasive arthroscopic surgery. That way, we could make sure she didn't have any arthritic process in the knee, while removing torn tissue in the middle of the meniscus and making it more 'c' shaped. That will re-establish the function of the meniscus, and it's important for the life of her knee joint."

Within three days of surgery, Sami's mom says, she'd weaned herself from the pain medication. With help from a familiar friend at All Children's Specialty Care of Sarasota-physical therapist Greta Via-Sami was out of her knee brace in less than a month.

"If I hadn't seen with my own eyes how much she could bend that knee so soon after surgery, I wouldn't have believed it," Via says. "This is why I LOVE working with kids!"

And that's another reason why Sami's family loves her All Children's care team. "All Children's is our home away from home," says mom. "We are so glad it's there. Without it, I don't know where we would be."

 



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