Archive for Thursday, October 2, 2003

De Soto girl walks away from illness with new insights

October 2, 2003

Beth Mayabb has a ready question that seems unusual for a 10-year-old.
"Do you want to see me walk?" she asked, quickly demonstrating on slender legs accentuated by a recent five-inch growth spurt a stride that has the pride and occasional weakness of a newborn colt. "I can walk perfectly good now."
A month ago, as Beth lay in a hospital bed with throat muscles too weak to swallow, she could only fantasize about the simple joy of walking. The girl her mother, Sheila Mayabb, calls a "Tomboy" was nearly paralyzed with Guillain-Barre Syndrome.
The girl's ordeal began in late July, when Beth started experiencing a headache and a tingling in her feet. Her daughter also started displaying an uncharacteristic chronic fatigue, Sheila said.
"She was always out on her bike, skateboard or something," she said. "I had to practically drag her in (for dinner). She would rather stay outside and play than come inside, even when she was hungry."
Sheila thought her daughter had the flu and treated her with over-the-counter painkillers. But Beth lost her appetite and continued to weaken. On Aug. 8 and again two days later, Sheila took Beth to the emergency room of a regional hospital, where it was suggested she had a virus.
The day after the second emergency room visit, Sheila decided she needed answers to Beth's condition, which had her complaining of intense pain and unable to keep down any food. To get those answers, she took her daughter to Children's Mercy Hospital in downtown Kansas City, Mo.
"I felt like I was getting stabbed in the legs," Beth said. "They felt like they were twisted."
Doctors were in and out of Beth's room all night, Sheila said. They ordered a spinal tap, thinking perhaps Beth had meningitis. The diagnosis was wrong, but the test did turn up an excess protein in the fluid, a sign of Guillain-Barre Syndrome.
Guillain-Barre is an inflammatory illness of peripheral nerves -- those outside the brain and spinal cord. The cause of non-contagious disorder is unknown, although it sometimes occurs after bouts with the flu or following vaccines. Its early symptoms are exactly those Beth experienced -- a rapid onset of weakness, numbness of extremities, and headache. As the condition worsens, it can cause paralysis of limbs and muscles used to breathe and eat.
Beth lay in the hospital room, a victim of near-lottery odds. The disorder strikes two in 100,000 Americans. Diagnosed and hospitalized, she was far from being out of danger. The next morning, Beth started a four-day stay in intensive care as her condition worsened.
"They told me she had to get worse before she got better," Sheila said. "They said it was like when you cut yourself -- you need time to heal. They said 90 to 100 percent recover. It just takes time."
Beth remembered little of the emergency room except its horrors.
"I was always tired," she said. "I woke up crying because the pain was so bad."
Beth was on a morphine drip that would automatically infuse her body with painkiller every 10 minutes, and she was equipped with a hand-activated button that would provide a boost on demand, Sheila said. Beth was also being fed through a tube because her throat muscles were too weak to swallow.
The single mother stayed in her daughter's intensive care room the first night. From then on, she commuted back and forth from De Soto, taking care of her 13-year-old son, Shane. She exhausted all her sick and vacation time she had from her job at Lab One in Lenexa as she stayed with Beth. Although she was eligible for family leave, Sheila couldn't afford to take too much unpaid time off from work.
"I was just glad she wasn't going to die," Sheila said. "But it was hard. It wore me out going to the hospital every day. But I wasn't going to leave her there alone."
The four days in intensive care were followed by more than five weeks in a hospital room, during which Beth was first confined to her bed. The normally active youngster said she started to brighten up when she could walk on her own.
"When my legs didn't hurt when I walked, I knew I was getting better," she said.
Released from the hospital Sept. 19, Beth now returns to the Rehabilitatve Institute in downtown Kansas City, Mo., every day for physical and occupational therapy.
"I stretch my legs and arms so the muscles will loosen up," she said. "I'm doing real well, and it's getting easier for me to do it."
Helping her and Beth through the ordeal were their former Overland Park neighbors Peggy and Wayne Welkner. Pictures the couple took of Beth on dirt bike outings decorated the girl's hospital home and provided motivation for her recovery.
Before her illness, Beth was a frequent visitor at the Clearview City home of her best friend, Kathleen Knapp. Kathleen's mother, Sandra Furman, said she learned about Beth's condition from her daughter.
She didn't see much of Sheila at the apartment complex because of the two women's work schedules, Furman said. During Beth's hospitalization, she never saw Sheila.
"I think I've meet Sheila twice," she said. "I know she's a very hard-working woman. She's raising two children on her own. If I was her, I would appreciate a little help."
Furman took a step to do just that, working with Team Bank of De Soto to establish an account in Sheila and Beth's names. Those wishing more information can visit the bank at 34102 Commerce Drive or call 583-3004.
Sheila said she didn't yet know the full financial consequences of her daughter's illness. She didn't have medical insurance for Beth. She filed for and received a child Medicaid waiver that should take care of much of bills that will likely exceed $100,000. The daily trips to the hospital and the family leave time from work also hit her budget, she said.
Beth got to visit her Starside Elementary School fifth-grade class Friday. Starting next week, she will only be required to go to therapy three days a week, freeing up two days for school. It would be the next step in what Beth said would be a full recovery.
"I'll be able to do everything I did before," she said. "I probably won't be able to do a cartwheel for awhile, but I'll be able to do it again someday."
Her bout with Guillain-Barre gave her a perspective she'd share with other students, Beth said.
"I'll tell them, 'You don't want to get sick to get out of school. Be glad you're able to walk. Some people get paralyzed for life.'"

Commenting has been disabled for this item.