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December-28th-2007, 10:54 PM
Yorktown girl can eat only one thing: costly formula that insurance won't cover (http://lohud.com/apps/pbcs.dll/article?AID=/20071228/NEWS02/712280372)
By SUSAN ELAN
THE JOURNAL NEWS
(Original publication: December 28, 2007)
YORKTOWN — Three-year-old Hannah Devane is allergic to food. Not the kind that makes kids spit out their broccoli; the kind that can kill.
The Yorktown preschooler has a condition called eosinophilic esophagitis, a severe food allergy that causes a type of white blood cell to congregate in the esophagus, the tube that carries food from the mouth to the stomach, damaging the tissue when she eats.
A doctor-prescribed formula has allowed Hannah to grow to a robust 40 pounds, a normal weight for a child her age. Without it, Hannah could wind up with a feeding tube.
But the insurance program that covers her family through her father's job as a New York City police lieutenant has stopped paying for the formula, which costs $1,200 a month. Food supplements and other over-the-counter items are not covered under the family's insurance, the prescription plan administrator said.
Arriving home hungry from day care, the blond, curly haired Hannah stretches out on the sofa with a bottle of formula.
"Our daughter has a disorder where she needs the formula to live," said Jessie Devane, 37, a registered nurse. "There is tissue damage if it is not treated. The treatment is no food. The insurance company won't even listen to Hannah's doctor."
Dr. Barry Wershil, a pediatric gastroenterologist at The Children's Hospital at Montefiore in the Bronx, doesn't hide his indignation over the insurance hurdle.
"This kid can't eat food," he said. "This formula is her only source of nutrition. The insurance (provider) saying they will not cover it is a travesty. It's like telling a diabetic they can't take insulin."
Hannah's food allergy appeared early. She made strange, hacking sounds like a cat coughing up a fur ball when she drank baby formula. There were frequent bouts of violent vomiting. Things got worse when she started eating baby food, and doctors thought it might be reflux disease.
"She would sit in her high chair and her eyes would roll back in her head," Jessie Devane said. "She would arch her back and she would seem to go into some kind of trance. After about 40 seconds it would stop. I'm a nurse, but I had never seen anything like it."
Hannah had her first upper endoscopy before she was a year old. Under general anesthesia, a flexible tube with a light and camera at its tip was inserted down her throat to look inside her esophagus, stomach and part of the small intestine. A biopsy showed that eosinophils, white blood cells that play a role in fighting infection, were attacking her esophagus.
Over time her esophagus could harden, making it difficult to swallow, Wershil said. If the scarring got bad enough, she would have to be hospitalized so her esophagus could be dilated. Repeated scarring could mean the esophagus might crack, Wershil said. In some cases, people wind up needing a feeding tube, he said.
There is no cure for eosinophilic esophagitis. It is treated by eliminating foods that produce an allergic reaction, and sometimes with steroids, which have serious side effects. Determining which foods are the culprits is a lengthy and arduous process involving food trials followed by endoscopies every three to six months.
Her parents were devastated when they learned what lay ahead. A second opinion from Cincinnati Children's Hospital Medical Center, which specializes in the condition, confirmed the diagnosis.
Hannah would have to stop all food, except the hypoallergenic formula, to give her esophagus time to heal. Even the bananas and flavoring that had made Elecare, an amino acid-based formula, palatable would have to go. Hannah would continue drinking the formula out of a baby bottle to help bypass the taste buds.
"It took a lot of work, screaming and yelling," Jessie Devane said.
But she wouldn't give up when a feeding tube might become the only alternative.
Nourished only with Elecare, Hannah's esophagus became free of inflammation, and the food trials began.
Chicken, potatoes and pasta came first. After a month, green beans and squash were added. Another endoscopy showed the eosinophils had returned.
Hannah switched to pork, broccoli, corn, carrots and applesauce. Those failed too.
"We have been doing this for two years and we are no closer to finding a solution," said Jessie Devane, as she fed her 6-month-old daughter, Sarah, who has begun to show some of the same symptoms as Hannah.
Now Hannah's diet consists of rice, pears and Elecare. She eats frequently because she can't keep food down. When she starts to vomit, she can do it five to six times in a row, projecting with a force that dirties her clothes and bed, her mother said.
Since early November, when Hannah's last case of insurance-covered formula ran out, her parents have spent about $300 a week on Elecare.
Michael Devane works a second job as a security guard to cover expenses. Jessie Devane works three times a week as a temporary nurse. Hannah can't take her formula to day care. She is only permitted to drink water and eat the rice and pears her mother prepares for her. She is ravenous when she gets home, her mother said.
The family had been getting coverage for Elecare because of an error, said Helen Sweeny, the administrator of the self-insured medical benefits fund run by the Superior Officers Council.
"The program would be broke if we tried to cover food," said Sweeny, who has run the program for 32 years.
"This is not a supplement an athlete is taking to build muscle," Wershil said. "It's her only source of nutrition. It's this kid's medicine. For the insurance to consider it a supplement is incorrect and unjust."
Click on the link for the full article
By SUSAN ELAN
THE JOURNAL NEWS
(Original publication: December 28, 2007)
YORKTOWN — Three-year-old Hannah Devane is allergic to food. Not the kind that makes kids spit out their broccoli; the kind that can kill.
The Yorktown preschooler has a condition called eosinophilic esophagitis, a severe food allergy that causes a type of white blood cell to congregate in the esophagus, the tube that carries food from the mouth to the stomach, damaging the tissue when she eats.
A doctor-prescribed formula has allowed Hannah to grow to a robust 40 pounds, a normal weight for a child her age. Without it, Hannah could wind up with a feeding tube.
But the insurance program that covers her family through her father's job as a New York City police lieutenant has stopped paying for the formula, which costs $1,200 a month. Food supplements and other over-the-counter items are not covered under the family's insurance, the prescription plan administrator said.
Arriving home hungry from day care, the blond, curly haired Hannah stretches out on the sofa with a bottle of formula.
"Our daughter has a disorder where she needs the formula to live," said Jessie Devane, 37, a registered nurse. "There is tissue damage if it is not treated. The treatment is no food. The insurance company won't even listen to Hannah's doctor."
Dr. Barry Wershil, a pediatric gastroenterologist at The Children's Hospital at Montefiore in the Bronx, doesn't hide his indignation over the insurance hurdle.
"This kid can't eat food," he said. "This formula is her only source of nutrition. The insurance (provider) saying they will not cover it is a travesty. It's like telling a diabetic they can't take insulin."
Hannah's food allergy appeared early. She made strange, hacking sounds like a cat coughing up a fur ball when she drank baby formula. There were frequent bouts of violent vomiting. Things got worse when she started eating baby food, and doctors thought it might be reflux disease.
"She would sit in her high chair and her eyes would roll back in her head," Jessie Devane said. "She would arch her back and she would seem to go into some kind of trance. After about 40 seconds it would stop. I'm a nurse, but I had never seen anything like it."
Hannah had her first upper endoscopy before she was a year old. Under general anesthesia, a flexible tube with a light and camera at its tip was inserted down her throat to look inside her esophagus, stomach and part of the small intestine. A biopsy showed that eosinophils, white blood cells that play a role in fighting infection, were attacking her esophagus.
Over time her esophagus could harden, making it difficult to swallow, Wershil said. If the scarring got bad enough, she would have to be hospitalized so her esophagus could be dilated. Repeated scarring could mean the esophagus might crack, Wershil said. In some cases, people wind up needing a feeding tube, he said.
There is no cure for eosinophilic esophagitis. It is treated by eliminating foods that produce an allergic reaction, and sometimes with steroids, which have serious side effects. Determining which foods are the culprits is a lengthy and arduous process involving food trials followed by endoscopies every three to six months.
Her parents were devastated when they learned what lay ahead. A second opinion from Cincinnati Children's Hospital Medical Center, which specializes in the condition, confirmed the diagnosis.
Hannah would have to stop all food, except the hypoallergenic formula, to give her esophagus time to heal. Even the bananas and flavoring that had made Elecare, an amino acid-based formula, palatable would have to go. Hannah would continue drinking the formula out of a baby bottle to help bypass the taste buds.
"It took a lot of work, screaming and yelling," Jessie Devane said.
But she wouldn't give up when a feeding tube might become the only alternative.
Nourished only with Elecare, Hannah's esophagus became free of inflammation, and the food trials began.
Chicken, potatoes and pasta came first. After a month, green beans and squash were added. Another endoscopy showed the eosinophils had returned.
Hannah switched to pork, broccoli, corn, carrots and applesauce. Those failed too.
"We have been doing this for two years and we are no closer to finding a solution," said Jessie Devane, as she fed her 6-month-old daughter, Sarah, who has begun to show some of the same symptoms as Hannah.
Now Hannah's diet consists of rice, pears and Elecare. She eats frequently because she can't keep food down. When she starts to vomit, she can do it five to six times in a row, projecting with a force that dirties her clothes and bed, her mother said.
Since early November, when Hannah's last case of insurance-covered formula ran out, her parents have spent about $300 a week on Elecare.
Michael Devane works a second job as a security guard to cover expenses. Jessie Devane works three times a week as a temporary nurse. Hannah can't take her formula to day care. She is only permitted to drink water and eat the rice and pears her mother prepares for her. She is ravenous when she gets home, her mother said.
The family had been getting coverage for Elecare because of an error, said Helen Sweeny, the administrator of the self-insured medical benefits fund run by the Superior Officers Council.
"The program would be broke if we tried to cover food," said Sweeny, who has run the program for 32 years.
"This is not a supplement an athlete is taking to build muscle," Wershil said. "It's her only source of nutrition. It's this kid's medicine. For the insurance to consider it a supplement is incorrect and unjust."
Click on the link for the full article