By Kim Hilsenbeck.
At age two, Bella Saenz wanted to be held – a lot – especially in the morning. Her mother, Jennifer Saenz of Buda, said she got to the point where her little girl would scream and cry whenever she or her husband Ernest put her down.
“And then we found she was starting to crawl,” Jennifer said.
But Bella had been walking for the better part of a year.
“We thought she must be having really bad growing pains,” Jennifer said. “It got to a point where you couldn’t put her down for 30 or 40 minutes because her legs would completely buckle. As soon as you put her down it was like she had no muscle.”
Bella Saenz, 4, and her brother Jacob, 8, of Buda, stopping playing long enough for their mom, Jennifer Saenz, to snap a photo. Bella battles Juvenile Idiopathic Arthritis (JIA) but new medications and treatments allow her to walk, run and even take dance lessons just like any other kid. (Courtesy photo) |
The family made a visit to Pediatric Junction in Buda. Dr. Karen Collins, the family’s pediatrician, sent Jennifer and Earnest to get for foot, leg and hip X-rays.
“Maybe she had a hairline fracture and we just don’t know?” Jennifer remembers asking the doctor.
But the X-rays came back fine.
Collins recommended the family give it some time and see if any other symptoms appeared.
Jennifer said things didn’t seem to get better. But it seemed Bella was experiencing pain mostly in the mornings.
“The time would progress for how long it would take for her to be okay with being put down,” she said. “And then by the afternoon, she’d be a normal two-year old. So, it was weird.”
At night, though, she said Bella was moaning in her sleep.
Collins sent the Saenz family to a neurologist.
“We did some serious tests,” Jennifer said, which included blood work.
When Jennifer got a call from a nurse on a Friday afternoon, she learned that her daughter may have Lupus, a chronic, autoimmune disease that can damage any part of the body, including skin, joints, and/or organs inside the body.
Jennifer called Collins, crying.
“Dr. Collins was like, ‘Hold on. Lupus is very hard to diagnose. You have to be going through it to diagnose it. But usually they wouldn’t tell you over the phone.’”
She then told Jennifer, “Whatever you do, don’t Google anything. Don’t get on your computer this weekend. Then Monday morning, we’ll figure out what’s going on.”
Did Jennifer listen?
“I did not,” she said. “As any good ‘mother doctor’ wouldn’t. I think I had my laptop open while I was talking to her.”
Jennifer met with Collins the next week and she recommended sending Bella to a pediatric rheumatologist in Austin.
“We thought ‘we’re going to go through another round of blood tests,’” Jennifer recalled. “Just by watching her walk, [the rheumatologist] said, ‘She’s got JIA.’”
That stands for Juvenile Idiopathic Arthritis. It’s not the same as rheumatoid arthritis that often affects older humans. Collins explained in an interview Monday that both involve an inflammation of the joints. Both are known as autoimmune disorders. JIA also has seven different types with varying symptoms.
In autoimmune diseases, according to kidshealth.org, white blood cells can’t tell the difference between the body’s own healthy cells and germs, such as bacteria and viruses. The immune system, which normally protects the body from harmful invaders, instead releases chemicals that can damage healthy tissues and cause inflammation and pain.
Basically, Collins summarized, the body attacks itself.
The specialist was able to identify Bella’s condition by watching the little girl walk. He also found her joints were swollen.
“She was so swollen,” Jennifer said, “but it’s hard to tell with toddlers since they’re chubby.”
Bella was diagnosed on a Tuesday. By Wednesday, she had an MRI and by Friday she received steroid injections into the affected joints.
“They gave her nine injections,” Jennifer said. “Wrists, knees, ankles, thumb, her toe and a pinky. Not her hips though.”
And because the child cannot move during the procedure, doctors had to put her under anesthesia.
“They also can’t walk after the injections because if child moves too much, the medication may not work,” Jennifer said.
In Bella’s case, the injections seemed to have a minimal impact.
“We saw relief for a couple of weeks,” Jennifer said.
The rheumatologist had Bella go through two more rounds, including several additional joints, but to no avail.
Jennifer also explained that the original diagnosis of Lupus may have been because the two diseases are similar.
“Between Lupus and arthritis it’s one blood level off,” Jennifer said.
These days, Bella, now four, is on medication to help stave off the arthritis.
Jennifer said that in the past five to 10 years, research and medication have improved the chances of children not becoming crippled with JIA.
In the past, she said, there was little hope of these children not ending up completely debilitated.
She feels much better about Bella’s future and like all moms, hopes for a cure someday. For now, however, the medication allows Bella to lead a mostly normal life.
“You wouldn’t know to look at her,” Jennifer said. “She walks and runs and takes dance classes.”
And though she still experiences some pain, Jennifer said the medication seems to have at least leveled off the progression of JIA for her daughter.
Collins said JIA is a rare condition, affecting about 50,000 U.S. children. Aside from Bella, Collins said she only has one other patient with the disease. Her medical partner has none.
She would like every family to have a medical home.
“Start with your pediatrician,” Collins advised to parents who think their child may have any kind of illness or disease. “They will help put the pieces together.”
Support the team
| "Ladybug Girl" Bella |
Anyone wishing to donate to Ladybug Girl Bella, which is Bella Saenz’s team for the Arthritis Walk on April 26 at Concordia University in Austin, should visit http://walktocurearthritisaustin.kintera.org.
The team name was inspired by the children’s book series by Davis Soman about a little girl who dresses up like Ladybug Girl (super hero style) and can conquer anything.
