Kansas teenager making slow progress with neurologic illness
By JEAN KOZUBOWSKI
AP Member Exchange
DELPHOS, Kan. — Rachael Bradshaw keeps busy.
The 15-year-old is finishing her freshman year at Minneapolis High School, where she was named yell leader for the cheer team. She’s on the yearbook staff. She was on the Scholar’s Bowl team and wishes the season were longer.
She’s active in her youth group at church.
She finally got her own pet, a hamster named Patches, which is litter-trained.
“It’s not quite a dog,” Rachael said, but her grandfather said he’d get her a dog as soon as she can run a quarter-mile. She expects it will be a miniature poodle.
The biggest worry she admits to is losing her 4.0 GPA if she doesn’t keep her algebra grade above 90, where it currently sits.
Also, the state won’t let her take the written test for her driver’s license because the Guillain-Barre Syndrome that she contracted a year ago in March has left her without feeling in her legs and feet.
Guillain-Barre Syndrome is a rare autoimmune neurological disorder in which the body attacks the peripheral nerves, outside the spinal column, causing some degree of paralysis. Some patients recover completely, but some don’t. In some patients left untreated, it can be fatal.
So her days include, in addition to school, occupation and physical therapies, because she hasn’t recovered as much as she’d like.
On April 30, Rachael started going back to Madonna Rehabilitation Center in Lincoln, Nebraska, for intensive outpatient treatment on Mondays, Tuesdays and Wednesdays, for six weeks.
On Thursdays and Fridays, she was back in Delphos, going to school.
She’s hoping to get feeling back in her lower legs and feet. Sometimes, she said, they feel like they’ve fallen sleep, which is a good sign.
“It doesn’t really hurt,” Rachael told the Salina Journal . “It’s that vibration feeling, kind of weird. … I feel like if I can get feeling back in my feet, I’ll have better perception of where my body is in space. That’ll come back in time, and it’s supposed to,” she said.
It’s just hard to wait. It’s kind of like having braces, which Rachael recently had taken off her teeth, her mom, Stacy Bradshaw, said.
“It took forever,” Rachael said, about wearing braces — and getting better.
“Especially when I’m so impatient and I want to get walking,” she said.
And driving. She has plans.
“I’m working on my driving stuff, and hopefully, once I get driving, I want to get a job,” Rachael said. “I want to be more independent and I want to be able to learn how to work better and for somebody else.”
Besides, like any other teenager in a small town, she says she’s bored.
Her therapist at Madonna suggested she try for her driver’s license. Madonna has a simulator that’s like a real car, which will test her reflexes for driving.
At least for right now, she’ll probably need hand controls on her vehicle.
In the meantime, on April 27, she received a reclining tricycle, an AmTryke, from the Salina Breakfast Bandits AMBUCS Club.
The tryke was fitted and accessorized for her, with input from her physical therapist.
Rachael said she likes it but hasn’t ridden it much since she’s been spending a lot of her time at Madonna.
She was relatively lucky; the doctors diagnosed her fairly quickly in March 2017 and stopped the paralysis before it reached her lungs.
She walked into the emergency room at Salina Regional Health Center on March 9, 2017, and has not walk unassisted since.
Rachael spent some time at Children’s Mercy Hospital in Kansas City, coming home from there May 5, 2017. She’s been to Madonna several times since, as an inpatient and for extensive outpatient treatment.
When she returned from Madonna in August, she was using a special walker that offered support to her upper body.
She’s graduated to crutches, Stacy Bradshaw, said. Rachael uses a wheelchair to go to school because it’s easier to get on and off the bus, but crutches everywhere else.
This time last year, she couldn’t even sit up by herself.
Except for some follow-up visits and evaluations, she hasn’t been back to Madonna since August.
Rachael recently took a high dose of steroids, Stacy said, because she had plateaued and wasn’t getting any better.
“The steroids are the only thing we’ve seen any kind of improvement with,” Stacy said.
Neurologic illnesses can be unpredictable. The steroids seemed to help her, but they don’t help everyone. Another common treatment, intravenous immunoglobulin treatment, helps some people but didn’t help Rachael.
Rachael would like to help people and hopes for a career as a doctor or veterinarian, or maybe a nurse.
Now, partly as therapy and partly because she’s always done art projects, she’s making clay turtles with blue ribbons on their backs to sell.
Turtles are the national symbol for GBS, and blue is the color.
She’s charging $15 for each turtle. In May, which is GBS/CIDP month, $5 from the sale of each turtle will go to support GBS/CIDP. GBS is a type of CIDP, or chronic inflammatory demyelinating polyneuropathy.
Even with art, classes, activities and learning to drive, Rachael makes her rehabilitation program a priority.
“It gets stressful,” she said. “I don’t have time for it, but I always have to make time.”
Information from: The Salina (Kan.) Journal, http://www.salina.com