Wednesday November 4, 2009
Family hopes to find support for illness
Toddler has battled juvenile rheumatoid arthritis since she was a baby
by Mary J. Lewis
For the Daily Mail
Ayla Wright, 3, of South Charleston, was diagnosed with juvenile rheumatoid arthritis when she was just 18 months old. The often painful joint condition is thought to affect fewer than 300,000 children and teenagers in the country.
SOUTH CHARLESTON, W.Va.--Ayla Wright ignored her new pediatrician "Darbie" doll.
But the patients - four plastic baby dolls - fascinated the 3-year-old.
"She's a baby fanatic," said her mom, Lesli Wright of South Charleston.
Ayla recognized Barbie's stethoscope and prescription pad right away and within a few minutes found the needles in the doctor's bag.
She picked up one of the plastic babies and gave it a shot in the thigh - in the same spot where her dad gives her weekly injections. The baby didn't get chocolate after her shot like Ayla does.
She has become all too familiar with long trips to the doctor, examinations, medicine and pain.
When she was 18 months old, Ayla began limping in the morning and would cry, Lesli said. "By the afternoon she was fine. This went on a couple of weeks."
Lesli and John Wright didn't realize anything was wrong.
Several weeks later, Ayla's knee swelled to the size of a softball.
Her parents took her to get an X-ray that day to rule out a tumor.
On the following Monday, the Wrights took Ayla to see Dr. Phillip Surface, an orthopedic surgeon in South Charleston and an acquaintance of John.
Because of the swelling, inflammation and pain but lack of infection or tumor, Surface suspected the cause.
Still, John said, "He had to look it up in the medical book because he'd never seen it around here."
Within weeks, tests confirmed the diagnosis: Ayla has juvenile rheumatoid arthritis.
"We traced her symptoms back 14 months," Lesli said.
"She was waking up in the middle of the night, screaming like something was wrong. We could never find anything wrong.
"I kept taking her to the doctor thinking she had ear infections. Nothing was ever wrong," she said.
"My husband said she cries way too much for something not to be wrong."
Juvenile rheumatoid arthritis is an autoimmune disorder that attacks the joints, often inflaming and stiffening them. It can affect a child's growth and cause permanent damage.
In 2007, the Centers for Disease Control and Prevention estimated that about 294,000 U.S. children under the age of 18 are afflicted.
Lesli said she knows other children in West Virginia must have juvenile rheumatoid arthritis.
"I'd love to start a support group so that I can meet other families in the area.
"I think it would be comforting if they could call somebody, ask questions. I would have loved to connect with someone."
She started a blog at http://lesli-onedayatatime.blogspot.com/ to reach out to other families.
Eventually she would like to organize an Arthritis Walk to benefit the Arthritis Foundation.
The Wrights admit they have probably had an easier time navigating the health care system than most people in their situation.
Both work in the medical field. John is a physician's assistant in surgery. Lesli is a nurse.
They knew they needed to go straight to a pediatric rheumatologist. There are none in West Virginia.
No rheumatologists in West Virginia who treat adults would see Ayla, the Wrights said.
"We're grateful for that now. They don't really treat children, and it's a whole different treatment for children versus adults," John said.
Ayla's disorder progressed from her knee to her ankle to her elbow. Four months later she had three joint injections of steroids under sedation.
"At that point she was dragging her leg when she walked," Lesli said.
"All her friends were out here running and playing, and she couldn't walk up on the curbs. Just normal stuff she should be doing."
The steroid injection in her right knee "helped tremendously. She hasn't had a problem since."
She stopped limping.
But then her fingers and toes would swell. Her neck was affected and now she has temporomandibular joint disorder.
"It was just one thing after another," her mother said.
When it started affecting joint after joint, doctors suggested that Ayla take Methotrexate.
"We didn't want to do that because it's a chemotherapy drug," Lesli said. "There were two pages of side effects.
"She's had mouth sores and upset stomachs the day after," she said of the treatments but added, "It's not as bad as it could be."
For five months the small girl was on steroids. Lesli said her daughter responded well but couldn't remain on those drugs. They can cause kidney failure and affect a child's growth.
Her flare-ups started again after they took her off the steroids, Lesli said.
Yet Ayla started growing again.
"Even with five months, which you wouldn't think is a big deal, they showed me," Lesli said. "There was a big difference in her height while she was on steroids. She didn't grow any. She started growing again as soon as she was off."
She wrote on her blog last week that Ayla weighs 32 pounds and stands 39 inches tall. She's tall for her age, Lesli wrote.
Many children with juvenile rheumatoid arthritis are underweight, Lesli said, often because they don't feel like eating because of their pain.
Because Ayla's immune system is compromised, her parents avoid places with lots of sick kids.
They don't want her to get a fever, in part because they would have to stop her medication to fight it.
"There is a chance of inflammation coming back and you're back to square one," John said.
Lesli said she had hoped to put Ayla in dance classes this year, so she stopped by a class with a friend.
"This one kid was coughing and sneezing then holding hands. Maybe as she gets a bit older she'll know more about not putting her hands in her mouth and washing her hands. Then she'll be able to do more things.
"We sanitize everything."
Ayla's older brother Kaleb is in high school.
When he comes home, the first thing she says is "Wash your hands," Lesli said with a laugh.
She plans to get Ayla the H1N1 vaccine Thursday at the county's health department because her daughter is at high risk for the flu.
The Wrights are hesitant about some vaccines, though.
Lesli said Ayla started showing symptoms after she got the three-in-one MMR vaccine for measles, mumps, and rubella.
"We decided not to get my 2-year-old son vaccinated. That's just a personal decision for us."
"I've talked to several people online that had the same thing happen after they had the MMR vaccination. There could be a connection. Of course, the doctors can't, don't say that."
Ayla still sees her regular pediatrician in South Charleston, but they go to Cincinnati to see her pediatric rheumatologist.
The trips have been arduous, Lesli said.
"She used to cry the whole way there and the whole way back, just being confined in the car."
Lesli said that was the worst part of the trip.
"She's just to the point where she won't cry during appointments. She would cry almost the whole entire time. And it's miserable. And it's three hours long.
"This last appointment she did awesome. She sat there the whole time and didn't cry."
About three months ago, doctors added Enbrel to the lengthy list of medications Ayla has taken.
"It was probably a couple of weeks after that that we noticed a change," her mother said.
That was about a year and a half after the diagnosis.
Yet her mother is grateful. "I feel like I can't complain at all because she's just like a new little girl."
A few weeks ago, Ayla climbed out of her bed for the first time. She said she was proud of herself.
Now, though, Lesli said she climbs out every night.
"Sometimes I feel like I'm back in the newborn stages again.
"She'd been in a baby bed for three whole years. And her brother, he just turned 2 and he's already climbed out. She just hadn't been able to. When she was his age, she couldn't climb and she wasn't feeling well."
She's not jealous that her younger brother, Brennan, has been able to be much more active, Lesli said.
"She coerces him. She likes to teach him to do everything."
After a year they hope to lower the dosage on her medications.
"After six months, if all her labs are normal and there's no sign of inflammation, she's considered in remission with medication. Then in a year if she's still the same with no inflammation and the lab results are normal, then we'll be able to start decreasing the medication."
Lesli said she's optimistic.
"I still have faith that we're going to beat this, that she'll outgrow it. We'll see."
I have had a great response to this article and hope I have made several new friends!! I will write later about all of the positive feedback I have received. It made me cry to think about how sweet, kind and caring people really are, especially to go out of their way to offer us support when they don't even know us. It is just amazing to me!! I am so happy that I was given this opportunity to tell Ayla's story. One thing for sure, I will never stop being my daughter's advocate!
Here is the Link to the newspaper article, http://charlestondailymail.com/News/200911030673?page=1&build=cache