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.