FPIES: New Hope for Children Who Can Eat Only Several Foods

Feb. 1, 2012— -- Landon Schultz celebrated his third birthday in September with a three-foot-tall pirate cake, one made of gold coins, jewels and fishnet, not flour, eggs and chocolate.

The toddler has a disorder known as FPIES and has only been able to eat five foods -- strawberries, blueberries, grapes, avocados and peppers. Another 34 foods could send him into fatal shock.

Today, in a big breakthrough in the toddler's diet, he has been able to add salmon and banana, along with an elemental formula.

His mother, Fallon Schultz, 29, of Howell, N.J., said there is a silver lining to this terrible condition. "In some ways, he has better nutrition than his peers," she laughs.

But until recently, Schultz was not laughing about her son's rare disorder, food protein induced enterocolitis syndrome, which took 19 months to properly diagnose and baffles much of the medical world.

Now, in just a year, Schultz has jump started an international education, research and advocacy foundation that allows parents to network and doctors to learn more about the life-threatening condition.

The International Association for Food Protein Enterocolitis (IAFFPE) is the first to address the disorder globally.

Doctors still don't even have an ICD-9 code to diagnose FPIES, according to the foundation, which is pushing for a medical diagnostic tool.

But Schultz said she has a new attitude about Landon's health.

"We have a different mindset now," said Schultz. "We can live like this. Although there might not be a lot of answers for us, Landon can still have an amazingly positive life and that is what we are focusing on. We have accepted that life is going to be this way."

FPIES is a spectrum of disorders that affects each child differently. Some even outgrow the condition.

In FPIES, there is an allergic reaction in the gastrointestinal system. The most common triggers are milk and soy, but any food, even rice and oats, can cause a reaction. It typically starts in the first year of life.

Unlike most food allergies, a FPIES reaction is delayed and usually begins two hours after the ingestion of food culprits.

Reactions include vomiting and diarrhea. In about 20 percent of the cases, children will go into shock, which can be fatal if symptoms are not immediately treated with the use of intravenous fluids for rehydration.

FPIES is especially difficult to diagnose because standard skin and blood testing for specific IgE (antibodies known as immunoglobulin E) are routinely negative.

It took 19 months for doctors to diagnose Landon. When he was two weeks old, he projectile-vomited and screamed all night as if he were allergic to his mother's breast milk. His diaper filled 10 times a day with blood and mucus and the eczema under the hair on his head began to bleed.

Numerous specialists saw Landon and one even accused Schultz, a clinical social worker, of having Munchausen syndrome by proxy -- a mental illness in which a parent fabricates the sickness of a child in their care.

One day, she found him completely limp in his crib after a nap. Doctors misdiagnosed him with a virus and he continued to get worse and lose weight. His colon was hemorrhaging.

Landon was eventually diagnosed by doctors at Children's Hospital of Philadelphia, which has supported his mother's efforts to start a foundation with a renowned medical board, the first of its kind for FPIES.

Doctors Are Better Educated About FPIES

Landon's physician, Dr. Jonathan Spergel, chief of CHOP's allergy division, 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," he told ABCNews.com last year when Landon was first being treated.

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 infancy.

Many mothers are finding renewed hope through the foundation.

Gracie Woodward is being treated at Stanford University's Lucille Packard Medical Center. From the time she was 6 months old, she went into hypovolemic shock every time she tried a new food. Hypovolemic shock occurs when blood and fluid loss is so severe that the heart is unable to pump enough blood to the body.

"One bite and she would get a reaction," said her mother, Lisa, 31, of Folsom, Calif.

Doctors said she would outgrow it when she was a year old, but now she is 29 months, and she requires a feeding tube so she can supplement her diet with formula.

"Now she can do some food like wheat and turkey, chicken and potatoes, but there's so much she can't have," said Woodward. "She also has trust issues with food because it made her so sick. We have to work with her."

Now her mother sits on the IAFFPE board as vice president of outreach. More than 400 parents with FPIES children now connect on the foundation's Facebook page.

"It's important to save families from what we went through," said Woodward, who is pregnant with a second child and whose husband had FPIES. "And studies may help our kids and grandkids."

Experts say many children outgrow FPIES, but Maya Rabban is now 12 and still has the disorder. She is treated at Mt. Sinai Hospital in New York and her mother, Liz Rabban, has been an adviser to the foundation.

Maya began to reject food she had been eating around 18 months old. She would begin vomiting, then go into a lethargic state. "We had a little nest on the bathroom floor and stay with her," said Rabban, 43, of Livingston, N.J.

"Nothing has been added since she was 5 -- nothing," said Rabban.

Maya said she eats a lot of soy products, but can also have fruits and vegetables, as well as bread. But like Landon, parties are a challenge.

"There is a bakery we know near us with cakes I can have," she said. "Now that I am older and go to bat mitzvahs -- I eat before I go out."

When she flies, Maya also has a special arrangement with the airport security staff so she can bring her food and water on board.

Her mother said that before the foundation was established, FPIES their doctors knew about the disorder, but didn't have an organization for parent support.

"They have a great team of pediatricians and allergists and internists and researchers now," Rabban said. "Fallon is an absolute godsend. She really rallied the troops."

"I cannot believe how fast we are moving and the momentum is picking up," said Schultz.

In the first year, she raised $50,000 in affiliation with CHOP. Wanting to do something on a larger scale, Schultz created an international organization, working closely with Spergel, who said her energy is "infectious."

Today, the foundation works with experts and mothers from around the globe. IAFFPE has been selected to exhibit this year at the American Academy of Allergy, Asthma and Immunology conference in Orlando, Fla., and to educate physicians and other exhibitors about FPIES.

As for Landon, doctors have told Schultz "not to hold my breath" for the FPIES to go away.

But, she said, "Life has gotten better and it's more manageable."

Landon's preschool has cooperated with his limited eating and let Schultz bring in the giant cake his mother constructed and filled with presents.

"It came out so cool," said Schultz. "He couldn't have even cared that he didn't have cake. And the other children were amazed with the foodless cake.

"We are learning to adjust and how to make his life fun without limitations," she said. "I had the parental joy of preparing it. In the past, it would have been heartbreaking and heart-wrenching."