Walking through the pain

Two young brothers deal with juvenile rheumatoid arthritis by keeping attitude positive

David Pickens, left and his brother, Nathan Pickens, relax at Look Rock Bakery and Pizzeria while talking to reporters about their juvenile rheumatoid arthritis.

Photo by Sherri Gardner Howell

David Pickens, left and his brother, Nathan Pickens, relax at Look Rock Bakery and Pizzeria while talking to reporters about their juvenile rheumatoid arthritis.

David Pickens and his little brother, Nathan Pickens, are like any other two siblings. David is quick to give his little brother a hard time, and Nathan is quick to return the favor.

Watching the two interact is comical. It’s obvious they love and loathe one another completely, depending on day or hour.

What isn’t funny is what both of them deal with every day that shows a wisdom and will beyond their young age.

David, 11, and Nathan, 9, both suffer from juvenile rheumatoid arthritis. Running, and sometimes walking, can be painful. Sometimes Nathan says he hurts just from wearing soccer cleats.

David was diagnosed with the arthritis when he was 5. Nathan learned he had the disease about a year ago, when he was 8.

The Pickens boys are 1 of only 400 families in the country who have two children suffering from juvenile rheumatoid arthritis, their mother, Sheri Pickens, said.

David said remembers learning he had the disease. He said he was surprised. “I was at the end of kindergarten. I thought, this is going to be different,” he said.

“He was so young,” his mom said. “He had a hard time understanding what it meant.”

When Nathan was diagnosed last year, he was optimistic. “I hoped it didn’t last long,” he said.

Having experience watching his brother deal with arthritis helped him cope and know what to do. “He understood a lot more about it because his brother had experienced that,” their mother said.

David said he’s learned to deal with the pain and that it doesn’t sideline him too often. “It’s not that difficult,” he said. “Sometimes I’ll have pain, and it hurts to where I can’t walk.”

David talks intelligently about his arthritis. When it flares up, he said, he would “be still and not walk.” He said flare ups have become less frequent since he started taking folic acid.

“I think it might have been when I started taking folic acid,” he said of the lessening of the painful episodes. “None of the other medicine works, and we had tried all of them.”

Sheri Pickens said the folic acid in his body gets depleted because of the Methotrexate he takes for the arthritis.

“It’s actually the Methotrexate that helps the arthritis. The folic acid, he takes it to replenish his body,” she said.

Nathan, who plays both indoor and outdoor soccer, has a much less complicated medicinal regimen because his arthritis isn’t as bad.

“It doesn’t really hurt much, but when it does I just take Advil, Advil is quick,” Nathan said.

“He complains mostly when he’s playing sports,” his mom said. “The cleats hurt the bottom of his feet.”

Sheri Pickens said Nathan does very well despite his arthritis. “He was already very athletic with sports when he was diagnosed, and I knew how much he loved it. He has been able to continue,” she said.

David said he also plays basketball and cross-country as well as being a goalkeeper on his soccer team. It’s his job as goalie that can sometimes be painful duty.

“If I get kicked in my joints, it will hurt, but if I don’t get kicked, it doesn’t affect it,” he said.

The two boys said their friends have accepted it and, in typical pre-teen fashion, “They don’t really care,” said David. “You’re still a normal person, you just have arthritis. They’re still your friends.”

At his age, Nathan said most of his friends don’t understand it. “Most of my friends don’t even know what it means,” Nathan said.

He does let his friends know they can’t “catch it” from him, he added. “I tell them its not contagious,” he said.

For mom, the shock came quickly.

“It was a big shock. It’s your baby, and you’re thinking, is this going to be debilitating in any way? When Nathan was diagnosed as well, it was quite shocking actually. Still, David had done so well, I knew Nathan would do well,” she said. “Dr. J. Frederick Wolf is our doctor. I knew we would find a way to handle it.”

Sheri said since the boys’ diagnosis, she has become more educated about juvenile rheumatoid arthritis, especially when it comes to treatment.

The Arthritis Foundation has helped, Sheri said. As the Foundation gets ready for it’s fund-raising walk, Sheri has her statistics, eager to help not only her boys, but all who suffer from the disease.

“There’s a shortage of pediatric rheumatologists,” she said, “one for every 1,300 children. In Tennessee, about 5,600 kids have some form of juvenile arthritis. There are 15,000 in Florida. It’s amazing. There are right at 300,000 children in the U.S. who suffer from some form of juvenile arthritis.

“And people don’t even realize it affects children.”

Despite the arthritis, both her sons have regular routines at their schools. Nathan goes to Porter Elementary School, and David attends Heritage Middle School.

One modification Sheri made with teachers was to allow David to use braces for his pencils to allow him to write easier when he was in fourth grade. “Mom brought me this big, blue, long thing to use as a pencil grip because my hand always hurts,” David said.

“It makes the pencil easier to hold,” Sheri Pickens said. “Both of their teachers have been very good.”

Last summer the boys went to a school sponsored by the Arthritis Foundation. At the Juvenile Arthritis Conference, they went to class with children their age who also had arthritis. “They still try to keep in contact with the kids they met,” Sheri Perkins said.

“One of the teachers in my class was in a wheel chair and had to take 15 pills a day,” Nathan said.

The boys said they both have fears regarding their condition. David said he is afraid of paralysis and having to use a wheelchair “where I can’t walk, can’t move at all,” he said.

Nathan echoed his brother’s fears. “Yes, I hope I don’t get paralyzed,” he said.

Their mother shared a more long-range concern. “My fear is that they won’t get to grow up doing exactly what they want to do, doing all the sports and stuff they want to do,” she said.

The family, however, has more hope than fear.

“There is hope. A lot of children do grow out of it by the time they’re 18 years old. There is so much hope, and, with money raised, they’re doing so much with research,” she said. “The goal is to get information out that there is hope for a cure if people will give and allow research to continue.”

Sheri Pickens said that for parents who are just learning their child has juvenile rheumatoid arthritis, there are plenty of resources to go to for help and information through the Arthritis Foundation. She advised that parents should then find a good rheumatologist who does well with children. “Then seek out other parents through the foundation to help support them so they’re not facing it all on their own,” she said.

David said he would try to encourage anyone his age dealing with the disease to not be afraid. “I’d tell them to not be scared. There’s hope. You’re probably still going to be fine.”

Nathan said anyone his age with arthritis should simply do what their doctors tell them. “Tell your mom to get the medicine you need to get, take it as needed and don’t worry,” he said.

Sheri Pickens said her boys’ attitudes have made a big difference in how well they’ve done in dealing with the disease. “Attitude is a whole lot of it. If you get down and think, ‘I’m never going to be able to do this, or I’m hurting and don’t want to get out of bed,’ it’s not a good day. If you have a good attitude and think, ‘I hurt but once I get up and move around, I’ll be OK,’ you’ll be able to make it through the day,” she said.

The Blount County Arthritis Walk will be held on Saturday, May 3, at Maryville College. The walk begins at 10 a.m.

To register, please visit www.blountcountyarthritiswalk.kintera.org At the site individuals can, send e-mails to raise donations, keep track of donations, and send e-mails to recruit members for a team.

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