Following up on our conversation
with arthritis activist and patient Kelly Rouba, we had a chance to talk to Kim Warren to get a parent's perspective on life with juvenile rheumatoid arthritis. Like Kelly, Kim's daughter Bailey was diagnosed with juvenile RA when she was just two years old. Bailey is now six and still battling this debilitating disease.
Tell us about how Bailey was diagnosed?
She was just over two years old when, one morning, she wouldn't get up. She was whining and crying and screaming, and I just knew that it wasn't a normal cry. I said, "Bailey, come to Mommy," and she just held her knee. It was clearly red and swollen and she refused to walk.
I took her right to the pediatrician and told him she needed an x-ray. I thought she had cracked her knee. He said, "No, we need blood work" and I said, "No, we need an x-ray! I'm her mother and I know what we need!" Then he told me that her knee was swollen and warm, so we needed blood work. It turned out her white blood count was incredibly high - I think 20,000 instead of the 1,500 or so it should have been.
The pediatrician sent us to an orthopedic surgeon. He drew fluid from her knee and she screamed - and when he saw the fluid, he sent us to Children's Hospital to get operated on as soon as possible in case there was an infection of some sort.
We ended up staying at the hospital for three days, with lots of tests and no answers. Finally, the day we were discharged, we learned that it was juvenile rheumatoid arthritis. Well, we thought that was no big deal. Maybe she'll have some soreness sometimes, we thought. But when we got home it was clear that it was going to be more serious than soreness and stiffness. She was crawling instead of walking, and she was clearly dragging her leg behind her. That's when we realized that this is a very, very serious disease. Her white blood cells actually attack the rest of her body.
What was her treatment like?
In the beginning, she was on a medicine that didn't seem to help as much as we had hoped. Then, about six months later, they opened a pediatric rheumatoid arthritis clinic right here in Birmingham, and the doctors they brought in were really experts.
The second prescription she got seemed to work better, so things were looking up. But then we learned that up to 30 percent of juvenile RA patients have uveitis, an eye condition that can cause blindness, so we had to take her to an eye checkup - and at her very first appointment, the doctor saw uveitis. It's related to the RA because RA can attack any part of the body. Hers started at the knee and has attacked her eyes. In fact, any time we try to wean her off her medicine, the uveitis attacks her eyes again.
So, it was the knee that gave you the clue that you needed to take care to preserve her eyesight?
If we hadn't seen the knee, we could have lost her eyesight. It's the leading cause of blindness and there are no symptoms. At her age, we wouldn't have even noticed if her eyesight started to fail until it was too late.
She hasn't had significant damage to her eyes yet, since we've kept it under control, but it's definitely our biggest problem, a hurdle we can't get over. When it flares, we go for appointments every two weeks. When it starts to get better, we can stretch it out to every four or six weeks. Last year, we thought we were over the hurdle. Every eye checkup was great, then the doctor looked in her eyes and said, "It's back."
What was that like, to hear that the progress had ended?
My stomach sank. For a parent, it's so hard to think that you're done with the battle, you're going to wean her off the medicine, you expect that things are now going to be fine, that when it isn't, your heart just sinks.
It's like the devil's attacking you and you don't even see it coming.
This child doesn't deserve anything that she has gone through. Each time that we are going well, it comes back with a vengeance.
Did you have any previous awareness of juvenile RA?
Never, and even now, when I talk about it, that's what people say: "I've never heard of it, I didn't know children can get arthritis." And they think it's like what adults get, you have an ache, soreness. It's nothing like that.
We have since learned that kids may have the RA present in their bodies for a while, but they don't present until they have an infection. Well, a few weeks previous, Bailey had a sinus infection. The day her knee started hurting her was three weeks later. We were blessed she had that infection so we could save her eyes. We were blessed that she got that infection so that she could get treated, and we were blessed to be in Birmingham because they were able to diagnose it here so early.
What are your hopes for Bailey's future?
My prayer is for her to be off her medicine. One of her medicines is chemotherapy at a low dose, and she's been on it for four years. She started it when she was two years old. I don't want her to have to be on chemo forever.
And of course, I want her body healthy and her eyes healthy. She gets frustrated and she gets angry by all of the checkups and the needles and the eyedrops.
I tell her that we have to protect her eyes. We want her to see what God has created. He created beautiful things and I want her to see them. She doesn't understand because she can see now, and doesn't understand that it could go away.
I want her leg to be better. She has pain in the back of her calf and in her arch. She has leg growth issues. The more her knee gets bent and contractured, the harder it is to straighten out. For years we thought it was a light case, but now the doctors say she may be in a different category than we thought.
We're definitely waiting for that miracle drug. Other medical causes get a lot more media attention and funding for their diseases. We need people to understand juvenile arthritis and to know what damage it does, and we need a miracle drug for these kids.
There have to be better medicines out there that can turn this demon off that is in their bodies. That's what we're waiting for.