Thursday, September 8, 2011

Living With FPIES

We have our first appointment with an allergist in the morning to discuss Jake's FPIES. If you want to know a little what it is like living with a little one who has this please feel free to read this article. My heart breaks every time.
Page 3 of 3

March 10, 2011

Fallon Schultz, a 28-year-old clinical social worker
from Howell, N.J., has known since her son Landon
was two weeks old that something was wrong. He had
horrible eczema and would scream day and night,
projectile vomiting after feeding as if he were allergic
to her own breast milk.

At her pediatrician's advice, Schultz switched to soy
and then to a nutrition formula, but it got much w
orse. Landon had diarrhea filled with blood and
mucus, 10 times a day, and soon he began bleeding
from the worsening eczema under the hair on his

Schultz gave him wheat when he was a toddler and
found him in his crib after a nap, "in a pool of vomit
completely limp." She rushed him off to a
gastroenterologist who said it was only a virus.

"I was hysterical," said his mother. "She kept telling
me I was a new mom and to stop worrying --
everything would be fine and things could be worse.
It was like a smack in the face."

At one point, Landon lost two pounds in two weeks
and had virtually stopped growing. Desperate, after
Schultz found "orange, jelly stuff" -- undigested food,
skin and blood in his diaper, she sought help from

Later, she learned that her baby's colon was

It took Schultz 19 months to get a final diagnosis --
food protein induced entercolitis syndrome, or FPIES,
a condition so severe that Landon can only eat five
foods: ripe strawberries, blueberries, avocados,
grapes, raisins and elemental formula.

"These kids are fighting natural food and adapting to
artificial food," said Schultz. "He can have artificial
flavoring, but not Italian ice with natural flavors like

Schultz drew from every emotional reserve she could
find to save her son, who is now 2, logging 482
phone calls to fight with her insurance company,
which refused to pay for his formula and the an initial
$500 visit to
Children's Hospital of Philadelphia

Numerous medical specialists dismissed her
concerns and she even received an anonymous letter
accusing her of having
Munchausen syndrome by
proxy -- a mental illness in which a parent fabricates
the sickness of a child in their care.

Landon was eventually diagnosed by doctors at

"They diagnosed him in 10 minutes," said his mother.
"I can't explain the feeling. It was bittersweet --
terrifying, and a relief."

And now the hospital's foundation has agreed to join
Schultz in setting up her new nonprofit, the
United Family Fund
to support education and
advocacy, and to find a cure for the syndrome. She is
hoping to raise an initial $300,000 from corporate
sponsors to raise awareness.

No other organizations exist for FPIES.

"Local doctors don't know about the disease and
Toddler Landon Schultz Eats Only 5 Foods or Goes Into Shock
because they don't pick it up. [Landon] has permanent
damage and is not going to get better," said Schultz.
"If you don't have something that is cookie-cutter,
they think you are crazy. I am trying to turn
something that has been a nightmare to help
someone else's child. It's been a long two years."

No Diagnostic Code Exists for

Doctors don't even have an ICD-9 code to diagnose
FPIES, according to the United Family Fund, which is
pushing for that medical diagnostic tool.

"Our lives have been taken over by FPIES, and I am
just trying to do everything I can as a mother to help
him and other children affected by this cruel disease,"
she said. "I want to do something big. I want these
kids to be better. It's not good enough for my son
and or the kids going through this."

Landon cannot eat 27 fruits, vegetables, milk and soy
products, grains and meats. If he does, he is in
excruciating pain. Then, for days afterwards, his
body fights the proteins in the food, damaging his
gut and causing such dangerous vomiting and
diarrhea that he runs the risk of going into a septic-
like shock.

Experts have no idea how many children suffer from
FPIES. Most will outgrow it in four or five years, but
Landon's case is so severe, no one can predict his
prognosis, according to Schultz.

"It's unclear how big the population is -- we don't
know," said
Dr. Jonathan Spergel, chief of CHOP's
allergy division, who estimates perhaps 1 in 100,000
children have the syndrome.

"My guess is we are better trained at recognizing it,
and therefore the disease is rising," Spergel said.

Processed foods, fewer probiotics, preservatives and
the use of antibiotics may all play a role, he said, but
research in this type of food allergy -- which may
behave like an autoimmune disease -- is still in its

"FPIES is not like the classic food allergies where you
eat and it occurs seconds later, like with a peanut
allergy," he said. "The reaction is delayed. That's what
makes it hard to diagnose."

Doctors can test fairly accurately for food allergies
with a skin and blood test, but most cases of FPIES
turn up negative.

"The gold standard is to give a child food and watch
for their reaction," he said. "But it's not pleasant to see
them get sick, so we work primarily on history, and
families describe if they ate this food and had a
reaction. We tell them to try this one food for a week
and then the next one."

When Schultz tried to introduce sweet potatoes into
Landon's diet last September, he had violent reaction
that landed back at CHOP for five days.

Even Gastric Tubes Fail Kids

Other families have struggled to keep their children
nourished and healthy.

Neveya O'Donnell was diagnosed with FPIES when she
was 8 months old, after she began bottle feeding.
Now, at 17 months old, she is less than 28 inches
long and weighs 16 pounds.

She's been fed with nasal and gastric tubes that "never
stayed in," according to her mother Renee O'Donnell,
an optician from Eau Claire, Wis.

"Unfortunately this has not helped her stay on the
growth charts," said O'Donnell, 28. "She continues to
fall farther and farther below the line."

Right now, Neveya can only take Neocate JR, which
costs $65 a can. Her mother also fought to get
insurance to pay.

"We had an in-hospital food trial for lamb and
bananas at the beginning of December -- lamb
caused skin problems," she said. "But when we did the
bananas she went into shock within four hours. This
is a typical reaction to all the foods we have tried."
Responding to families like the O'Donnells, who help
with FPIES Family United Fund, has inspired Schultz.

"I turned from mourning all the time, to feeling
empowered," she said. "I feel like I am helping others,
giving a place for the families in our community."

Life hasn't been easy for her family. The couple had a
car accident when Schultz was 9 months pregnant
and her husband Chris had spinal surgery, and is
now unemployed. They moved out of their house and
are renting it to decrease their expenses, because one
parent had to stay home with Landon.

Now, Landon also is participating in a study on
cytokines, TNF and response to gut flora, which is
being run by Dr. Harumi Jyonouchi, an associate
professor at University of Medicine and Dentistry of
New Jersey. She is also director of the university's

Pediatric Center for Rare and Complex Disease.

Schulz said they have determined that her son likely
would not overcome his severe reaction to foods. But
CHOP's Spergel says he is "more optimistic."

"The majority of these kids we see outgrow it," he
said. "Landon may not be able to eat everything, and
he'll always need some elemental formula to get his
balanced calories, but he'll be able to eat more than
four foods."

Spergel applauds Schultz for starting her nonprofit
and has pledged to support her.

"She has very global vision to everything -- which is
fabulous," he said. "She is high energy, which is
good. I say, 'Be careful, don't over-stretch yourself.'
But I am impressed with how much she has done and
how fast she's done it."

To which Schultz characteristically responds, "I have
enough room to stretch right now. We have such an
incredible community and I have been so touched by
strangers. I don't even know them and they provide
support. That's one of the beautiful things. I've been
able to delegate and not one person said, 'I can't do

To provide corporate sponsorship or donations to
begin international research go to the
FPIES United
Family Fund.



  1. All I can say is Wow. Good luck in this fight against FPIES with your little one!

  2. Um lets not hope this is his/your fate