In seach of a safe place Ill child illustrates growing problem of allergies, eczema and asthma
By Cindy Hadish
CEDAR RAPIDS - On a sunny spring day when most of her friends are outside enjoying the fresh air, the only "nature" Lynda Taylor sees are the butterflies and flowers imprinted on her hospital room's ceiling tile.
The 4-year-old's combination of severe eczema, allergies and asthma prevents her from playing outdoors at most times of the year.
Her case is an extreme example of the trio of disorders that doctors are seeing more often. Its cause is unknown.
The family's experience with insurance claims, lack of sleep and other problems associated with extreme stress also illustrates the difficulties encountered by many people with chronic illnesses and their caregivers.
All of Lynda's caregivers interviewed by The Gazette repeat the same refrain: that the fair-skinned little blonde should be given a chance at a normal life. But they agree that heavy odds are stacked against her.
Last week, Lynda was at Mercy Medical Center in Cedar Rapids for the fifth time in five months after she had a severe reaction that turned her skin beet-red and left bleeding sores on her face.
The likely trigger was carpet being removed from the family's home in Center Point, although Lynda was next to an air purifier, away from where work was under way. Allergy experts have told the Taylors their home should have no carpet.
"There are a lot of factors it could be," said her mother, Laurie Taylor.
Not only do seasonal allergens like pollen trigger potentially fatal reactions, including throat swelling, but Lynda also reacts to many foods.
Her entire menu consists of just 12 selections, including pears, carrots and chicken.
Laurie Taylor, 36, formulated her daughter's favorite food, pancakes made with buckwheat flour. Otherwise, she can have no bread products.
When her friends eat cupcakes at parties at her day-care center, Lynda looks forward to a special treat: sugar cubes.
The lack of diversity in her diet and her need to be on steroids to control the conditions has stunted her growth and could lead to organ problems later in life.
Lynda's pediatrician, Dr. Sharon Collins of Pediatric Center in Cedar Rapids, said she sees other patients with eczema, allergies and asthma.
"Hers is the most challenging right now, because of her many reactions to so many things," she said. "It's very miserable for this little girl."
Risks include life-threatening skin infections, as she is allergic to many antibiotics.
Collins' goal is to have Lynda seen at a specialized center in Denver where doctors could determine what exactly causes her allergies, so the Taylors can better control her environment.
For now, her parents do as much as they can under the stressful circumstances.
They are attentive to their two other children as well, Collins said, "but when you have a crisis, you have to deal with the crisis."
Her parents discovered early on that Lynda was sensitive to many foods.
Her father, Sean Taylor, 40, described the "mango incident," in which she vomited on his lap and broke out in a rash within five minutes of eating the tropical fruit.
"You don't want to be paranoid about what she eats, but you almost have to be paranoid," he said.
While Laurie Taylor works at Fiserv and Sean is employed at Information Services USA, both in Hiawatha, Lynda is in day care at Growing Years Childcare in Cedar Rapids.
Director Lori Jones said Lynda has been at the center since it opened in 2004.
Staff there are well-trained to help with her conditions, including how to use an epinephrine injector in case Lynda has a severe allergic reaction. Walls in the office and classroom detail signs of allergic reactions and Lynda's list of approved foods.
Other parents have been understanding. Many send stickers or sugar cubes for her on birthdays.
Jones said Lynda understands what is safe for her. She often has to stay indoors when her class goes outside, and she knows she cannot eat the food her classmates do.
Once, when her friends were having dinosaur-shaped chicken nuggets, Lynda told Jones, "Those are bad for me, but I do like dinosaurs."
Day-care staff have come to see the Taylors as family and are concerned about what will happen once Lynda enters public school.
In the meantime, they are organizing a fundraiser to help the family with medical expenses.
The Taylors say they are grateful to have health insurance, but only a portion of Lynda's needs are covered.
For example, an over-the-counter cream applied numerous times daily to her skin is an out-of-pocket expense. A doctor-prescribed water softener and infrared sauna have been rejected by the insurance company.
Co-payments and deductibles already have totaled several thousand dollars this year for the middle-class family. Sending Lynda to a specialized hospital would cost tens of thousands of dollars more if insurance won't cover it, Sean Taylor estimated.
(Laura Schmitt/The Gazette) Laurie Taylor points out her sleeping daughter Lynda's bandaged feet. After recent continuous breakouts, Lynda, 4, must have her whole body wrapped twice a day after a special lotion is applied to soothe her skin. The insurance situation came to a head in March, when doctors at University Hospitals in Iowa City and Mercy Medical Center recommended three centers where Lynda might receive the specialized help she needs.
The insurance company instead approved a hospital in its network that was not on the recommended list.
After driving more than five hours to the approved hospital in St. Louis, doctors there told the Taylors to turn around and go home because there was nothing they could do for her.
Finally, after sending photos of her condition, they received authorization to go for one day to one of the specialized centers: National Jewish Medical and Research Center in Denver.
The hospital, dedicated to respiratory, immune and allergic disorders, has a 10-day program.
Lynda must stop all medications for five days before she is seen at the hospital, so her parents hope they have to make the trip only once.
Even as her medications wear out between doses, her discomfort is evident.
She alternates between grabbing handfuls of skin to scratch or picking at one spot until it's raw in an attempt to relieve the itchiness.
Wet pajamas soothe her skin and allow her to relax so she can fall asleep at night.
Even then, she often wakes up screaming and lotion has to be reapplied or pajamas moistened again.
"It's very rare that we get a good night's sleep," Laurie Taylor said.
Enlarge This Photo (Laura Schmitt/The Gazette) Lynda Taylor (left) colors with her sister, Callie, 2, while staying with their grandparents in southeast Cedar Rapids on Friday. The girls' home was being sanitized to make it safe for Lynda, who has allergies, eczema and asthma. The couple's other children, Matthew, 15, and Callie, 2, also have allergies, but not to the extent that Lynda does.
Sean Taylor is sensitive to a few foods and has hay fever, while both he and his wife recently reacted to an antibiotic they were on to protect Lynda from staph infections. Otherwise, Laurie Taylor has no allergies.
Deanna Glass, a social worker at Mercy Medical Center, said the Taylors appeared to be ideal candidates for the ABC show "Extreme Makeover: Home Edition."
Glass envisioned an enclosed outdoor play area where Lynda could swing and play on climbing walls with friends, while being protected from warm-weather allergens and dry winter air that exacerbates her skin condition.
Laurie Taylor's brother, however, works for an ABC affiliate, which likely would preclude the family from being considered for the show.
Members of Center Point United Methodist Church have taken up the family's cause, providing food and support and helping sanitize the home so Lynda could return after her hospital stay.
Still, Glass hopes some organization might step forward to build an indoor playground for Lynda.
"We want to give this child as normal a life as we can," she said. "A place where she can enjoy the outdoors, but still be protected."
A backyard swing set at their home is seldom used. Laurie Taylor described times when she wished she could be outdoors, at least to push Callie on the swing.
On most nice days, she sits and rocks Lynda in front of a glass door at their home, so she can watch children across the street ride their bicycles, as she would like to do.
The couple remain optimistic that her conditions can be controlled at the Denver hospital enough to find out more about her allergies.
They also hold out hope that she will grow out of some of the problems.
"You don't want your child sitting and rocking as the world goes by," her dad said.