Fw: [TPNsupport] newspaper article

[Guest guest]

[TPNsupport] newspaper article

>

>

>Steph,

>

>The article turned out good. I thought it was well written.

>

>Patty

>

>Here is a copy of the text, it is found at:

>http://www.fredericksburg.com/news/stories/0206harl.htm

>

>LIKE OTHER 12-year-olds, Harlow usually comes home from school with

>a case of the hungries.

>

>In the family's Spotsylvania County kitchen, however, no cookies or potato

>chips line the shelves. Instead, selects a box of instant nutrition

>called Elecare to quiet his rumbling stomach.

>

>The Ni River Middle School seventh-grader mixes the white powder with

water,

>attaches a big plastic syringe to a tube that connects directly to his

>stomach underneath the left side of his rib cage.

>

>While the formula drains into his body, he talks to his mother, ,

>about his day.

>

>About 20 minutes later, is full. He disconnects the tubing and goes

>into the living room to play computer games.

>

> is one of five members of his family who are nourished by foodless

>feedings. His mother and brothers Korey, 7, and Killian, 3, are fed by

pumps

>four times a day.

>

>Five-year-old Kody's case is the most severe. He is fed by a method known

as

>total parental nutrition, or TPN, in which a tube inserted into his chest

>delivers a liquid diet full of calories, vitamins and minerals, directly

>into an artery near his heart.

>

> and all five of her sons suffer to varying degrees from

>eosiniphilic esophagitis and eosiniphilic gastroenteritis-a combination of

>diseases characterized by an allergic reaction to complete proteins.

>

>The disorder results in swollen, hardened tissue in the esophagus, stomach

>and small intestines. Such narrow openings make it difficult for food to

>pass through the digestive system.

>

>Since any food with nutritive value is made up of complete proteins, almost

>every kind of meat, vegetable, fruit and dairy product causes choking,

chest

>pain, bloody stools, nausea and vomiting.

>

>Doctors rarely see the malady.

>

> " There is no other family in the United States like this, with five family

>members, who have the disease so severely, " said Dr. , a

>Fredericksburg allergist.

>

>, 16, also has the disease, but his symptoms are mild. He is the only

>family member who can eat a normal meal with his father, Navy Lt.

>Harlow.

>

>Since 's birth, the family has sought treatments from civilian and

>military hospitals and specialists locally and in nearby states.

>

>They have relied on the support of private-duty nurses, friends, relatives

>and neighbors in Westbury Manor subdivision for day-to-day survival.

>

>Unwinding a medical mystery

>

> Harlow, 36, has had difficulty swallowing since she was a child.

>Foods such as tacos, potato chips and tomato products have always caused

>choking and an ache in her chest.

>

> " One day in fifth grade, I passed out right in the school's hallway from

the

>pain, " she recalled.

>

>When she was in her early 20s, doctors thought 's problem was only

>a serious case of heartburn. Later, they settled on a diagnosis of reflux,

a

>condition in which stomach acid backs up into the esophagus, throat and

>mouth.

>

>Fifteen years ago, doctors discovered a ledgelike closure in her esophagus

>and tried to dilate the narrow opening with a 2-foot-long tube. The

normally

>painless procedure left her in agony.

>

>All of 's sons showed signs of digestive distress as babies with

>bouts of choking, vomiting and chest pains.

>

>Doctors ordered numerous tests. For years, the diagnosis was reflux.

>

>In 1992, doctors perforated 's esophagus during an examination. The

>boy was transported to the intensive-care unit at Walter Army Medical

>Center in Washington.

>

>The accidental puncture yielded unexpected results. During an exam to

>reinspect the tear, doctors finally found a hardened obstruction high in

>'s esophagus, and doctors began to rethink the diagnosis. Still,

they

>had no answers.

>

>In 1995, 's condition worsened.

>

> " I couldn't eat or drink, " she said. " I couldn't swallow because that ledge

>hurt so bad. "

>

> went on two, monthlong stints of intravenous feedings.

>

>When she was able to eat again, dilated her throat every two days

>by pushing a tube past the obstruction and clearing the way for food.

>

> " It's a gross thing to do, " said, " but it wasn't too horrible. "

>

>Matching the symptoms

>

>In 1997, when and Harlow's fifth child was a year old, Dr.

> Bornstein, a pediatric gastroenterologist who practiced at Walter

>, matched the Harlow boys' symptoms with a disease he had heard about

at

>a medical conference.

>

>After confirming the diagnosis through tests, Bornstein immediately put

Kody

>and on prednisone to ease their reactions to food. , ,

>Korey and Killian were next.

>

>It was the breakthrough the family had been waiting for.

>

> " It was a tremendous relief after all those years of doctors scratching

>their heads, not knowing why you hurt so bad, " said.

>

>The prednisone caused the obstructions to recede and, for the first time in

>years, everyone could eat without pain.

>

> " Having something that worked was as tremendous as hearing the diagnosis, "

> said.

>

>However, the steroid caused an array of side effects including swollen

>faces, insatiable appetites, weight gain and suppressed immune systems.

>Using prednisone for long periods also causes kidney damage and stunts

>growth.

>

>To avoid that, switched her family to an allergy medicine but,

>soon after, the obstructions returned.

>

>Making decisions

>

>The couple had two choices: their children could take the prednisone,

suffer

>the side effects, but be able to eat normally, or they could stop eating

and

>turn to liquid nutrition while doctors determined which foods were causing

>the allergic reactions.

>

>They chose the liquid feedings, first receiving nutrition through tubes

>running into their noses and down to their stomachs.

>

> " That was six weeks of a nightmare, " said.

>

>After tests proved which formula worked best for the family, and

>her boys opted for tubes surgically inserted into their stomachs.

>

>For , managing the disease is like riding a roller coaster. The

>symptoms can produce crashing lows or ease up to give the family a

momentary

>sense of exhilaration. All of it takes a toll, said.

>

>For example, while the tube-feedings worked for five of the family members,

>Kody's symptoms did not abate.

>

> " He couldn't tolerate it. He was still retching and gagging and crying, "

> said. " We tried different formulas, but they didn't work. "

>

>Last August, an ulcer in Kody's stomach hemorrhaged. Blood spewed from his

>mouth, nose, rectum and the now-unused gastric tube site. The boy arrived

at

>Walter in shock from losing so much blood.

>

> " It took them all night to stabilize him, " said.

>

>The life-threatening episode changed her attitude about the disease.

>

> " It's emotional to go through that. You hear what could happen, and you

don'

>t think it could happen to you, but it can, " she said.

>

>Gathering a support system

>

>The Harlows have relied on a battalion of doctors and friends to help them

>through each crisis.

>

>Allergist took over their care two years ago and began

>contacting drug companies to find a formula the family could tolerate.

>

> " He's done an excellent job of learning about the disease and keeps up on

>what is going on in the allergy community that could help us, "

>said.

>

>The boys' Fredericksburg pediatrician, Childress, coordinates care

>with physicians at Walter so the family can avoid some trips to the

>hospital.

>

> Clift, a friend the family called " Nana, " keeps the boys when

> has to race with a child to the emergency room.

>

> " She's learned tube care and how to feed them, how to operate the pumps, "

> said. " I've had to drop kids off at all hours of the day and

>night, and she knows that I may not be back to get them for a day or two

>when Kody is being hospitalized. "

>

> Harlow's sister lives nearby and often lets vent her

>frustrations.

>

>Family friend Carden found a way to help the Harlows take their minds

>off their maladies. She contacted Make-A-Wish Foundation, which sent them

to

>Disney World for four days in November.

>

>For the first time in months, the family gained a sense of normalcy.

>

>They took high doses of prednisone so they could enjoy mealtimes together

>without pain.

>

> " So much of the trip revolved around food, and there was no way to keep

them

>from it, " said. " Mealtimes were significant. "

>

>It was a rough time for Kody, who still couldn't eat with the family. He

was

>sick in the mornings and exhausted by the end of the day. If his feedings

>weren't done by the time sightseeing began each morning, he carried his

pump

>in a backpack.

>

> " The big rides were out of the question, " said.

>

>Problems persist

>

>These days, gastrointestinal problems still rule the home.

>

>One day last month, Korey's gastric tube valve broke and the site was

>leaking.

>

>Killian woke up vomiting after a nap in his mother's bed.

>

>'s valve sprung a leak and she spent most of a night in

>Washington Hospital's emergency room.

>

>In the last few weeks, she had a severe allergic reaction to a new formula

>and is now back on prednisone in addition to being connected to a pump for

>feeding eight to 10 hours a day.

>

>The setbacks are disappointing.

>

> " I thought [the new formula] would be a simple, longer-term solution, but

>the situation keeps changing and we have to regroup, " she said.

>

>Kody's care requires two private nurses who work eight-hour shifts to hook

>him up to his formula and keep the tube site and tubing clean.

>

>Nurse Delores comes on duty for the 7 a.m. shift and goes to school

>with Kody.

>

>While the preschooler learns to master numbers and the alphabet,

>monitors Kody for signs of abdominal pain or infection.

>

> " I keep an eye on him, " she said. " He can get really sick within five to 15

>minutes. "

>

>About 10 o'clock, she disconnects the TPN pump and flushes the line with

>saline and heparin.

>

>At lunchtime, she and Kody sit in the school cafeteria and draw pictures

>with colorful markers. Kody rarely asks for food, even though children all

>around him are gulping hamburgers and chicken nuggets, said.

>

> " He knows what he can and can't have. He doesn't bother with things that he

>knows have made him sick in the past, " she said.

>

>Learning to cope

>

>Kody and his brothers show signs of accepting their foodless conditions.

>

>If feedings aren't done by the time they're ready to play outside, they put

>the pumps in their backpacks so they can romp with friends in the back

yard.

>

>After a recent snowfall, the boys built snowmen complete with holes for

>gastric tubes in their icy sides.

>

>And there are often blessed bouts of normalcy in the household.

>

>The small boys chase each other around the kitchen in Little Tikes cars.

>They argue over who gets the couch when it's time to watch " Power Rangers. "

>

> manages to work 50 hours a week doing medical transcription in

her

>home office.

>

>But the differences between the Harlows and other families are obvious at

>mealtimes as prepares pumps, tubes and bags of liquid nutrition.

>

> is careful to fill the pumps with amounts tailored to each child.

>Too little and there's not enough nourishment; too much and the recipient

>throws up.

>

>As the liquid fills their stomachs, the family sits together in the den to

>watch television.

>

> Harlow and eat in the dining room away from the others.

>

>When the family first went on tube feedings, asked her husband to

>eat out or go over to their neighbors for dinner.

>

>That didn't bother Harlow, but concealing his meals from the children

>did.

>

> " and I had to hide for the first few months so they wouldn't get

> upset, " he said. " It's been hard to tell [the kids] that what I am eating

>is bad or yuck. "

>

> occasionally cooks for her husband, even though her cooking

skills

>are hampered because she can't taste the food.

>

> " How will I know if it tastes right? If I taste, I pay, " she said.

>

> misses some foods, especially when the aromas from her husband's

>meals fill the house. Harlow avoids eating pizza at home-it was

>'s favorite food.

>

>Some activities and traditions that most families take for granted are just

>not allowed.

>

> " We don't go to fast-food places or on family picnics, " said.

>

>Still, food is not forbidden in the Harlow home. If the kids want to eat,

>their mother allows it but monitors their intake.

>

> " We're not inclined to deny food. It's more a matter of finding a balance

>between health and psychological and social needs, " she said.

>

>And dispenses Popsicles, marshmallows and flavored drink mixes in

>abundance because they have no nutritive value.

>

> " I'm the only mother I know who encourages her kids to drink Kool-Aid, " she

>said.

>

>Candy satisfies their need for oral stimulation; gummi candies give them

the

>opportunity to chew.

>

>The boys occasionally attend birthday parties but rarely eat the offered

>cake because they get enough sugar at home.

>

>One thing and Harlow don't worry about is how to cope with

>expenses, which totaled nearly $1 million last year.

>

> Harlow's military health insurance covers most of the doctor bills,

>hospital visits, lab tests, formula, equipment and nursing-care costs after

>a $1,000 deductible is met each year, said.

>

>What's ahead for Harlows

>

> hasn't given up hope of finding better treatments for her family.

>She calls doctors and hospitals. She searches the Internet, looking for new

>medicines and procedures.

>

>In 1998, she launched a Web site of her own with pictures of her children

>and the story of their fight against eosiniphilic esophagitis.

>

>Facing the disease head-on has helped come to grips with the

>illness and makes her want to help others. She often counsels parents who

>need information and moral support.

>

> said her symptoms are getting worse as she gets older. The

choking

>and chest pain are more severe.

>

>In the last two months, as she has given her children bites of foods such

as

>chicken or potatoes, she has discovered that it is not a specific food that

>causes the allergic reactions. What is more critical is the amount of

>complete proteins that are ingested.

>

>That's good news. hopes that one day she can assemble enough

foods

>to provide adequate nutrition. Then, she and the children can resume eating

>breakfast, lunch and dinner.

>

> " If we can find enough foods that can give us enough calories, we can scale

>back our tube feeds and wean ourselves off, " she said.

>

>However, their allergist said it is likely that the family will always use

>gastric tubes.

>

> Harlow is angry that such a painful fate has befallen his wife and

>children.

>

> " We've traveled the spectrum from what might have been an unusual isolated

>case with Kody's diagnosis, to a bizarre situation where nearly my whole

>family is affected, " he said. " At first, I felt angry and frustrated and I

>wanted to blame something or someone.

>

> " But had the doctors not intervened when they did, Kody probably would have

>starved to death before the end of 1997. "

>

>Even in the darkest days, Harlow was a pillar of strength, his wife

>said.

>

> " He has had to make some tremendous changes in his own life and had to make

>compromises for our disease, " said. " He supports us and sticks by

>us. That is no small accomplishment and I do not take that for granted. "

>

> Harlow used to feel a lot of guilt for having passed the disease

>on to her children, but that burden has eased.

>

> " Once we all started feeling better, it wasn't that bad, " she said. " You

can

>look at the glass as half empty or half full. We feel better now. Food is

>more important to the rest of the world than to us.

>

> " A beautiful sunrise is more important than breakfast. "

>

>

>

>---------------------------

[Guest guest]

[TPNsupport] newspaper article

>

>

>>

>>

>>Steph,

>>

>>The article turned out good. I thought it was well written.

>>

>>Patty

>>

>>Here is a copy of the text, it is found at:

>>http://www.fredericksburg.com/news/stories/0206harl.htm

>>

>>LIKE OTHER 12-year-olds, Harlow usually comes home from school

with

>>a case of the hungries.

>>

>>In the family's Spotsylvania County kitchen, however, no cookies or potato

>>chips line the shelves. Instead, selects a box of instant

nutrition

>>called Elecare to quiet his rumbling stomach.

>>

>>The Ni River Middle School seventh-grader mixes the white powder with

>water,

>>attaches a big plastic syringe to a tube that connects directly to his

>>stomach underneath the left side of his rib cage.

>>

>>While the formula drains into his body, he talks to his mother, ,

>>about his day.

>>

>>About 20 minutes later, is full. He disconnects the tubing and

goes

>>into the living room to play computer games.

>>

>> is one of five members of his family who are nourished by foodless

>>feedings. His mother and brothers Korey, 7, and Killian, 3, are fed by

>pumps

>>four times a day.

>>

>>Five-year-old Kody's case is the most severe. He is fed by a method known

>as

>>total parental nutrition, or TPN, in which a tube inserted into his chest

>>delivers a liquid diet full of calories, vitamins and minerals, directly

>>into an artery near his heart.

>>

>> and all five of her sons suffer to varying degrees from

>>eosiniphilic esophagitis and eosiniphilic gastroenteritis-a combination of

>>diseases characterized by an allergic reaction to complete proteins.

>>

>>The disorder results in swollen, hardened tissue in the esophagus, stomach

>>and small intestines. Such narrow openings make it difficult for food to

>>pass through the digestive system.

>>

>>Since any food with nutritive value is made up of complete proteins,

almost

>>every kind of meat, vegetable, fruit and dairy product causes choking,

>chest

>>pain, bloody stools, nausea and vomiting.

>>

>>Doctors rarely see the malady.

>>

>> " There is no other family in the United States like this, with five family

>>members, who have the disease so severely, " said Dr. , a

>>Fredericksburg allergist.

>>

>>, 16, also has the disease, but his symptoms are mild. He is the only

>>family member who can eat a normal meal with his father, Navy Lt.

>>Harlow.

>>

>>Since 's birth, the family has sought treatments from civilian and

>>military hospitals and specialists locally and in nearby states.

>>

>>They have relied on the support of private-duty nurses, friends, relatives

>>and neighbors in Westbury Manor subdivision for day-to-day survival.

>>

>>Unwinding a medical mystery

>>

>> Harlow, 36, has had difficulty swallowing since she was a child.

>>Foods such as tacos, potato chips and tomato products have always caused

>>choking and an ache in her chest.

>>

>> " One day in fifth grade, I passed out right in the school's hallway from

>the

>>pain, " she recalled.

>>

>>When she was in her early 20s, doctors thought 's problem was

only

>>a serious case of heartburn. Later, they settled on a diagnosis of reflux,

>a

>>condition in which stomach acid backs up into the esophagus, throat and

>>mouth.

>>

>>Fifteen years ago, doctors discovered a ledgelike closure in her esophagus

>>and tried to dilate the narrow opening with a 2-foot-long tube. The

>normally

>>painless procedure left her in agony.

>>

>>All of 's sons showed signs of digestive distress as babies with

>>bouts of choking, vomiting and chest pains.

>>

>>Doctors ordered numerous tests. For years, the diagnosis was reflux.

>>

>>In 1992, doctors perforated 's esophagus during an examination. The

>>boy was transported to the intensive-care unit at Walter Army Medical

>>Center in Washington.

>>

>>The accidental puncture yielded unexpected results. During an exam to

>>reinspect the tear, doctors finally found a hardened obstruction high in

>>'s esophagus, and doctors began to rethink the diagnosis. Still,

>they

>>had no answers.

>>

>>In 1995, 's condition worsened.

>>

>> " I couldn't eat or drink, " she said. " I couldn't swallow because that

ledge

>>hurt so bad. "

>>

>> went on two, monthlong stints of intravenous feedings.

>>

>>When she was able to eat again, dilated her throat every two

days

>>by pushing a tube past the obstruction and clearing the way for food.

>>

>> " It's a gross thing to do, " said, " but it wasn't too horrible. "

>>

>>Matching the symptoms

>>

>>In 1997, when and Harlow's fifth child was a year old, Dr.

>> Bornstein, a pediatric gastroenterologist who practiced at Walter

>>, matched the Harlow boys' symptoms with a disease he had heard about

>at

>>a medical conference.

>>

>>After confirming the diagnosis through tests, Bornstein immediately put

>Kody

>>and on prednisone to ease their reactions to food. ,

,

>>Korey and Killian were next.

>>

>>It was the breakthrough the family had been waiting for.

>>

>> " It was a tremendous relief after all those years of doctors scratching

>>their heads, not knowing why you hurt so bad, " said.

>>

>>The prednisone caused the obstructions to recede and, for the first time

in

>>years, everyone could eat without pain.

>>

>> " Having something that worked was as tremendous as hearing the diagnosis, "

>> said.

>>

>>However, the steroid caused an array of side effects including swollen

>>faces, insatiable appetites, weight gain and suppressed immune systems.

>>Using prednisone for long periods also causes kidney damage and stunts

>>growth.

>>

>>To avoid that, switched her family to an allergy medicine but,

>>soon after, the obstructions returned.

>>

>>Making decisions

>>

>>The couple had two choices: their children could take the prednisone,

>suffer

>>the side effects, but be able to eat normally, or they could stop eating

>and

>>turn to liquid nutrition while doctors determined which foods were causing

>>the allergic reactions.

>>

>>They chose the liquid feedings, first receiving nutrition through tubes

>>running into their noses and down to their stomachs.

>>

>> " That was six weeks of a nightmare, " said.

>>

>>After tests proved which formula worked best for the family, and

>>her boys opted for tubes surgically inserted into their stomachs.

>>

>>For , managing the disease is like riding a roller coaster. The

>>symptoms can produce crashing lows or ease up to give the family a

>momentary

>>sense of exhilaration. All of it takes a toll, said.

>>

>>For example, while the tube-feedings worked for five of the family

members,

>>Kody's symptoms did not abate.

>>

>> " He couldn't tolerate it. He was still retching and gagging and crying, "

>> said. " We tried different formulas, but they didn't work. "

>>

>>Last August, an ulcer in Kody's stomach hemorrhaged. Blood spewed from his

>>mouth, nose, rectum and the now-unused gastric tube site. The boy arrived

>at

>>Walter in shock from losing so much blood.

>>

>> " It took them all night to stabilize him, " said.

>>

>>The life-threatening episode changed her attitude about the disease.

>>

>> " It's emotional to go through that. You hear what could happen, and you

>don'

>>t think it could happen to you, but it can, " she said.

>>

>>Gathering a support system

>>

>>The Harlows have relied on a battalion of doctors and friends to help them

>>through each crisis.

>>

>>Allergist took over their care two years ago and began

>>contacting drug companies to find a formula the family could tolerate.

>>

>> " He's done an excellent job of learning about the disease and keeps up on

>>what is going on in the allergy community that could help us, "

>>said.

>>

>>The boys' Fredericksburg pediatrician, Childress, coordinates care

>>with physicians at Walter so the family can avoid some trips to the

>>hospital.

>>

>> Clift, a friend the family called " Nana, " keeps the boys when

>> has to race with a child to the emergency room.

>>

>> " She's learned tube care and how to feed them, how to operate the pumps, "

>> said. " I've had to drop kids off at all hours of the day and

>>night, and she knows that I may not be back to get them for a day or two

>>when Kody is being hospitalized. "

>>

>> Harlow's sister lives nearby and often lets vent her

>>frustrations.

>>

>>Family friend Carden found a way to help the Harlows take their

minds

>>off their maladies. She contacted Make-A-Wish Foundation, which sent them

>to

>>Disney World for four days in November.

>>

>>For the first time in months, the family gained a sense of normalcy.

>>

>>They took high doses of prednisone so they could enjoy mealtimes together

>>without pain.

>>

>> " So much of the trip revolved around food, and there was no way to keep

>them

>>from it, " said. " Mealtimes were significant. "

>>

>>It was a rough time for Kody, who still couldn't eat with the family. He

>was

>>sick in the mornings and exhausted by the end of the day. If his feedings

>>weren't done by the time sightseeing began each morning, he carried his

>pump

>>in a backpack.

>>

>> " The big rides were out of the question, " said.

>>

>>Problems persist

>>

>>These days, gastrointestinal problems still rule the home.

>>

>>One day last month, Korey's gastric tube valve broke and the site was

>>leaking.

>>

>>Killian woke up vomiting after a nap in his mother's bed.

>>

>>'s valve sprung a leak and she spent most of a night in

>>Washington Hospital's emergency room.

>>

>>In the last few weeks, she had a severe allergic reaction to a new formula

>>and is now back on prednisone in addition to being connected to a pump for

>>feeding eight to 10 hours a day.

>>

>>The setbacks are disappointing.

>>

>> " I thought [the new formula] would be a simple, longer-term solution, but

>>the situation keeps changing and we have to regroup, " she said.

>>

>>Kody's care requires two private nurses who work eight-hour shifts to hook

>>him up to his formula and keep the tube site and tubing clean.

>>

>>Nurse Delores comes on duty for the 7 a.m. shift and goes to school

>>with Kody.

>>

>>While the preschooler learns to master numbers and the alphabet,

>>monitors Kody for signs of abdominal pain or infection.

>>

>> " I keep an eye on him, " she said. " He can get really sick within five to

15

>>minutes. "

>>

>>About 10 o'clock, she disconnects the TPN pump and flushes the line with

>>saline and heparin.

>>

>>At lunchtime, she and Kody sit in the school cafeteria and draw pictures

>>with colorful markers. Kody rarely asks for food, even though children all

>>around him are gulping hamburgers and chicken nuggets, said.

>>

>> " He knows what he can and can't have. He doesn't bother with things that

he

>>knows have made him sick in the past, " she said.

>>

>>Learning to cope

>>

>>Kody and his brothers show signs of accepting their foodless conditions.

>>

>>If feedings aren't done by the time they're ready to play outside, they

put

>>the pumps in their backpacks so they can romp with friends in the back

>yard.

>>

>>After a recent snowfall, the boys built snowmen complete with holes for

>>gastric tubes in their icy sides.

>>

>>And there are often blessed bouts of normalcy in the household.

>>

>>The small boys chase each other around the kitchen in Little Tikes cars.

>>They argue over who gets the couch when it's time to watch " Power

Rangers. "

>>

>> manages to work 50 hours a week doing medical transcription in

>her

>>home office.

>>

>>But the differences between the Harlows and other families are obvious at

>>mealtimes as prepares pumps, tubes and bags of liquid nutrition.

>>

>> is careful to fill the pumps with amounts tailored to each

child.

>>Too little and there's not enough nourishment; too much and the recipient

>>throws up.

>>

>>As the liquid fills their stomachs, the family sits together in the den to

>>watch television.

>>

>> Harlow and eat in the dining room away from the others.

>>

>>When the family first went on tube feedings, asked her husband

to

>>eat out or go over to their neighbors for dinner.

>>

>>That didn't bother Harlow, but concealing his meals from the

children

>>did.

>>

>> " and I had to hide for the first few months so they wouldn't get

>> upset, " he said. " It's been hard to tell [the kids] that what I am eating

>>is bad or yuck. "

>>

>> occasionally cooks for her husband, even though her cooking

>skills

>>are hampered because she can't taste the food.

>>

>> " How will I know if it tastes right? If I taste, I pay, " she said.

>>

>> misses some foods, especially when the aromas from her husband's

>>meals fill the house. Harlow avoids eating pizza at home-it was

>>'s favorite food.

>>

>>Some activities and traditions that most families take for granted are

just

>>not allowed.

>>

>> " We don't go to fast-food places or on family picnics, " said.

>>

>>Still, food is not forbidden in the Harlow home. If the kids want to eat,

>>their mother allows it but monitors their intake.

>>

>> " We're not inclined to deny food. It's more a matter of finding a balance

>>between health and psychological and social needs, " she said.

>>

>>And dispenses Popsicles, marshmallows and flavored drink mixes

in

>>abundance because they have no nutritive value.

>>

>> " I'm the only mother I know who encourages her kids to drink Kool-Aid, "

she

>>said.

>>

>>Candy satisfies their need for oral stimulation; gummi candies give them

>the

>>opportunity to chew.

>>

>>The boys occasionally attend birthday parties but rarely eat the offered

>>cake because they get enough sugar at home.

>>

>>One thing and Harlow don't worry about is how to cope with

>>expenses, which totaled nearly $1 million last year.

>>

>> Harlow's military health insurance covers most of the doctor bills,

>>hospital visits, lab tests, formula, equipment and nursing-care costs

after

>>a $1,000 deductible is met each year, said.

>>

>>What's ahead for Harlows

>>

>> hasn't given up hope of finding better treatments for her

family.

>>She calls doctors and hospitals. She searches the Internet, looking for

new

>>medicines and procedures.

>>

>>In 1998, she launched a Web site of her own with pictures of her children

>>and the story of their fight against eosiniphilic esophagitis.

>>

>>Facing the disease head-on has helped come to grips with the

>>illness and makes her want to help others. She often counsels parents who

>>need information and moral support.

>>

>> said her symptoms are getting worse as she gets older. The

>choking

>>and chest pain are more severe.

>>

>>In the last two months, as she has given her children bites of foods such

>as

>>chicken or potatoes, she has discovered that it is not a specific food

that

>>causes the allergic reactions. What is more critical is the amount of

>>complete proteins that are ingested.

>>

>>That's good news. hopes that one day she can assemble enough

>foods

>>to provide adequate nutrition. Then, she and the children can resume

eating

>>breakfast, lunch and dinner.

>>

>> " If we can find enough foods that can give us enough calories, we can

scale

>>back our tube feeds and wean ourselves off, " she said.

>>

>>However, their allergist said it is likely that the family will always use

>>gastric tubes.

>>

>> Harlow is angry that such a painful fate has befallen his wife and

>>children.

>>

>> " We've traveled the spectrum from what might have been an unusual isolated

>>case with Kody's diagnosis, to a bizarre situation where nearly my whole

>>family is affected, " he said. " At first, I felt angry and frustrated and I

>>wanted to blame something or someone.

>>

>> " But had the doctors not intervened when they did, Kody probably would

have

>>starved to death before the end of 1997. "

>>

>>Even in the darkest days, Harlow was a pillar of strength, his wife

>>said.

>>

>> " He has had to make some tremendous changes in his own life and had to

make

>>compromises for our disease, " said. " He supports us and sticks

by

>>us. That is no small accomplishment and I do not take that for granted. "

>>

>> Harlow used to feel a lot of guilt for having passed the disease

>>on to her children, but that burden has eased.

>>

>> " Once we all started feeling better, it wasn't that bad, " she said. " You

>can

>>look at the glass as half empty or half full. We feel better now. Food is

>>more important to the rest of the world than to us.

>>

>> " A beautiful sunrise is more important than breakfast. "

>>

>>

>>

>>---------------------------