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 worse. 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 head.
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 specialists.
Later, she learned that her baby's colon was hemorrhaging.
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 pears."
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 (CHOP).
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 CHOP. "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 FPIES 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 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 FPIES
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 infancy.
"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 it.'"
To provide corporate sponsorship or donations to begin international research go to the FPIES United Family Fund..