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Kenai girl tries to lead normal life with rare disease

Posted: December 12, 2011 - 5:44am
In this Dec. 2, 2011, photo, Bailey Balzer, left, raises her hands in victory while playing a video game with Clara Moore in Kenai, Alaska. Balzer is a normal youngster in just about every way except one: All but just a few forms of food make her very sick. (AP Photo/Peninsula Clarion, M. Scott Moon) MAGS OUT, NO SALES  M. SCOTT MOON
M. SCOTT MOON
In this Dec. 2, 2011, photo, Bailey Balzer, left, raises her hands in victory while playing a video game with Clara Moore in Kenai, Alaska. Balzer is a normal youngster in just about every way except one: All but just a few forms of food make her very sick. (AP Photo/Peninsula Clarion, M. Scott Moon) MAGS OUT, NO SALES

KENAI — It’s a mild Friday afternoon and Bailey Balzer is playing video games.

She clutches the controller and looks at her competition — two boys thinking they’ll have an easy opponent in the 10-year-old girl.

Ambient chatter surrounds the three youths as they set up the Nintendo Wii console at Icons 907, a youth recreation center owned in part by Bailey’s parents in Kenai’s Old Town.

“It’s on,” Bailey says with confidence. She easily dispatches the boys, paying little concern to the oversized backpack flopping around on her shoulders in the process.

A frail-looking tube protrudes from the green backpack, runs down her side and up her pink shirt dead-ending close to her belly button.

At first glance, the tube doesn’t seem to be that important — just an appendage of the girl who is effortlessly ignoring it.

However, it contains a pale fluid pumped into Bailey’s stomach for 10 hours a day.

Food.

It’s her lifeline. On the other end is the pump. Bailey isn’t like most — her body rejects almost all of the food she eats.

Officially, she’s diagnosed with eosinophilic gastroenteritis. It’s a condition that, along with Bailey’s numerous allergies, forces her to get all of her nutrition from the pale colored formula.

Bailey’s nurse practitioner, Kim Longcake, who specializes in pediatric gastroenterology in Anchorage, said reports indicate 28 in 100,000 people are diagnosed with the disease.

However, Longcake can count on one hand how many patients of hers across Alaska are as severe and require a feeding tube to live.

Any food, save for a handful of fruits, makes Bailey sick. Makes her throw up. Makes her miserable. Despite the stress, the worry and sometimes exhausting schedule her daughter’s condition presents her, Bailey’s mother, Gail, maintains it is necessary for her daughter to live the normal life of a 10 year old.

“There are no holds barred,” Gail said, referring to her daughter’s interaction with other kids. “We don’t stop her. Her local doctor would probably have a fit if she saw, but it is like I don’t want to prevent her from doing what she wants to do. Hopefully there are no repercussions from it.”

“Like what?” Bailey said, taking her attention away from the video game.

“Like anything,” Gail responds. “Unicycling, wrestling, running, playing, jumping. That makes her a little nervous. What do you think of that? Should we make you sit down all the time and make you not do anything because your tube might get pulled?”

“But then I won’t be able to play the Wii,” Bailey said, drawing a chuckle from mom.

“We try to keep everything as normal as possible and whatever she wants to do, we will try and allow her to do it,” Gail said.

Normal for Bailey isn’t what her family expected when she was born May 8, 2001.

“Bailey was my healthy one up until about kindergarten — she started complaining about stomach aches all of the time,” Gail said sitting in an overstuffed couch in her living room east of Soldotna.

In first grade, Bailey started throwing up every meal she ate. She dropped to a sickly 37 pounds, Gail said.

“There were days when she couldn’t even stand up straight, the pain was so bad even when she wasn’t vomiting,” Gail said. “When she would eat, she would only eat small amounts because her stomach would immediately hurt.”

After a battery of tests, Bailey was diagnosed with eosinophilic gastroenteritis, or EGE. According to the American Partnership for Eosinophilic Disorders, EGE is a rare disease in which a type of white blood cell, the eosinophil, causes injury and inflammation to the stomach and the small intestine. The symptoms vary and are widespread. Food allergies sometimes also play a role in the disease.

“When they came back and said this is what we found — there’s damage inside, it was like, ‘Oh, thank goodness, there is something going on,’” Gail said. “I hate to say it that way, but you have this child that is always saying, ‘Oh, I’m sick I can’t go to school’ and what do you begin to think as a parent when there’s nothing else you can physically tell is wrong except the itching and the rashes?”

After a host of tests and trying different foods, Bailey’s diet was stripped to a minimum.

In its place, she was fitted with a nasogastric tube threaded through her nose and run into her stomach, which filled her with the nutritionally complete formula.

“All of a sudden, she started to grow,” Gail said.

Bailey’s immune system is essentially inappropriately reacting to food, said Longcake, a nurse practitioner at Providence Pediatric Gastroenterology Clinic in Anchorage. Her reaction occurs in the small intestine, which is a common place for it, Longcake explained.

“Certainly there are varying degrees of its severity,” she said about EGE. “A lot of people can be diagnosed with eosinophilic gastroenteritis.”

What is uncommon, however, is to have a lot of allergies like Bailey and not be able to tolerate food of any kind, save for just a few.

“The immune system doesn’t normally react to the proteins in the food that we eat,” Longcake said. “It is a reaction and causes an inflammatory process to happen. There is kind of a big debate of whether the allergy causes the inflammation or there may be some sort of inflammatory process going on that then causes lots of food allergies. Honestly the jury is still out.”

Her condition has forced her to depend on the formula, which contains only the basic building blocks of food.

But can a person live — and thrive — through a tube?

“Absolutely — it is nutritionally complete,” Longcake said. “For some people, that’s all they will ever know in their life is formula and tube feeding.”

Adjusting was hard.

No birthday cake.

No candy on Halloween.

No turkey and stuffing on Thanksgiving.

“You have no idea how many things involve food until you can’t eat,” Bailey said.

In front of her is a laptop. She is checking Facebook. To her right is a large jar filled with cherries she eagerly scoops out.

It’s one of the foods left she doesn’t throw up in addition to melons, grapes, yellow peaches and berries, except for raspberries.

“The biggest reason we try and keep some fruits going is because it is not so much that she needs them, it is to keep that motion of chewing,” Gail said. “If you are not chewing on a regular basis, your muscles will stop working. She’ll lose the ability to chew and swallow and we don’t want that to happen.”

This summer, when Bailey had the nasogastric tube inserted to deliver her formula, Gail and Bailey’s father Tony both had a decision to make.

The sight of a child with tubes coming out of her nose was “absolutely visual” and shocking to some.

How do parents handle such a situation? How do parents need to act? What would Gail do, she wondered, “because Bailey is the one who is going to have to live with this?”

Faced with the option of shuttering her daughter away and reducing the chances of negative interactions in the public light, Gail took a 180, so to speak. She decided the Balzers would be open and honest about what they were faced with.

The first time Bailey was out in public with the nasogastric tube was during a Little League softball game in June.

“We sat right in the field in front of everybody and fed her,” Gail said with a laugh. “It was just very out in the open. I’m not going to hide this, we are just going to be as open as possible and as normal as possible.”

It took a bit of bravery, she added.

“There were some parents who were like, ‘Why are you doing this in front of everybody?’ and I was like, ‘Why wouldn’t I?’” she said.

In August Bailey was fitted with a gastric tube connecting directly to her abdomen that is a little more discreet than the nasogastric tube.

But what about other kids?

“When the kids first see it, they feel a little weird, but then when they get used to her, they don’t think it is any big deal,” Gail said.

Bailey is in the fifth grade and home schooled through the Kenai Peninsula Borough School District’s Connections program. Gail and Tony decided to pull her out of regular school because she was missing so much of it during the time when she was being diagnosed.

She is also enrolled in Quest, a program for gifted and talented students at Soldotna Elementary in addition to the music classes she takes.

She is sharp — bored by some of her schoolwork. She misses the regular school environment, but Gail thinks they’ll hold off until the seventh grade before they attempt public school again.

Sometimes she has to feed during school.

“Kids don’t really ask about stuff unless I really show them,” she said.

Adults, Gail said, are another story.

“When we are in the grocery store, there are people that kind of look,” she said. “Sometimes if I see someone kind of looking I will say, ‘Hey, this is what it is.’ We are trying to make her feel like there is not anything wrong with it.

“That’s why I am like, ‘Lift your shirt, show them. Who cares?’ You want to try and keep that self-confidence there.”

People are always going to have questions.

“I just feel it is better . to be out with it, otherwise you are just going to give them a complex,” she said. “I think at first a lot of people were put off by how I handled it. But I’m like, ‘I’m doing it for her sake because I want that confidence up.’ I don’t want her to be ashamed. I think that has paid off for us because she handles it really well.”

Right now there is no cure for Bailey’s condition, Longcake said.

But she, like the family, is optimistic.

“For a lot of people we identify what their food allergies are, we eliminate them, we stop the body from seeing those proteins for a year or so and then we retest them and a lot of times a lot of the allergies, if not all, have gone away,” she said. “It is possible it gets to the point where it doesn’t have the impact — the younger you are, the more likely that is going to be your outcome.”

With Bailey however, things haven’t gone quite as expected.

“I am still hopeful that we can continue to stop her immune system from being bothered and be able to advance her diet with our end goal hopefully being that someday she can go back to eating, most, if not all of her calories by mouth,” Longcake said.

There are also layers of symptoms and day-to-day effects not necessarily testable.

Because she is allergic to cobalt, Bailey’s jeans must be washed several times before she can wear them, Gail said, because the blue dye would cause a mild skin rash.

She can’t drink water from the tap, or swallow pills with gelatin capsules.

She also has special earrings made from gold because she can’t wear anything with nickel, something she is also allergic to.

But she doesn’t let those things, or the risk they will happen again, stop her from doing what she wants to do. And Mom certainly isn’t standing in the way.

“We went canoeing across the lake and we camped out one night,” Bailey said detailing her recent trip to Girl Scout camp. “And I climbed a rock wall.”

Bailey likes cooking for her family.

Ask her why and she’ll shrug her shoulders.

She made a birthday cake for her dad and sometimes bakes cookies, makes a quesadilla for her older brother or soup for the family — none of which she can eat.

But, she often can be spotted hovering over the family’s food “like a hawk,” Gail said. She sniffs the aroma, as if slowly remembering what it tastes like.

“We have tried to put less emphasis on food in our own family, but it is really difficult because everything you go to has food,” Gail said.

But no matter how good other foods smell, Bailey is kept to her formula.

It comes in powdered form.

From a can.

And each one costs about $128.

Bailey needs 2,300 calories a day, but at one time Medicaid only paid for 2,000 calories. Gail said she had to fight to get all of her daughter’s calories approved, but is now fully covered through it and their insurance.

Her diet is balancing out at one and a quarter cans a day.

There was a time when Gail could only get 28 cans a month, meaning she would have to dip into reserves stockpiled from trips to the hospital when Bailey was first diagnosed.

Now, Gail still worries about her daughter having enough formula, but not as much.

“The biggest issue is it seems like it is always on backorder,” she said.

Nonetheless, Gail said she and Tony are grateful for the help they’ve had from state and federal programs.

“Her formula costs are like $4,500 a month,” Gail said. “There is no way we would be able to do that.”

Tony agreed, but that didn’t make it any easier to originally admit the couple needed help.

“I remember when we first found out those prices him saying, ‘How are we going to do that?’” Gail said.

“Yeah, because I have never been one to want any assistance,” Tony said. “No. I live on my own. I work and if it is tight it is tight, if we’ve got extra, we’ve got extra. I don’t think that way I guess.”

Gail contends she is too busy with Bailey’s day-to-day care to think past the next day’s schedule, doctor’s appointment or the next trip to Anchorage to see Longcake.

But even if she had the time to think about what her daughter’s life might be in the future — five years from now when she is learning to drive, ten years when she is in college, or 20 years when she might be looking to start a family of her own — she doesn’t want to.

“Whatever happens, happens,” she said.

Tony and Gail have been married for about 11 years. Tony works two weeks on and two weeks off driving trucks to support drilling rigs on the North Slope.

He said Gail’s actions have helped relieve some of the worry from his mind.

“You want the best for your kids, you want to give them treats, you want them to enjoy everything,” he said. “It seems like food is such a key part of life, not as in pure sustenance but as in enjoyment. For me lately I have been struggling with the whole fear that she is going to basically lose the zest for life.”

Bailey’s favorite school subject is vocabulary.

She wants to either be a singer or a teacher.

She has several friends, and goes to slumber parties every now and then.

But, Bailey needs someone who understands.

“Nobody knows what it is like to, and even I don’t know to the full extent what it is like to be like that because I am not the one that has to go through it,” Gail said.

“The hard thing is going to be stepping back and letting her kind of go it on her own and trusting that she will make her own decisions. That she can take care of herself. We’re giving her the tools so she can.”

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