Food Protein Induced Enterocolitis Syndrome (FPIES) diagnosis severely restricts diet for area 18-month-old

Jessica Winters and her son, Riven, enjoy some time at the Waukon City Park. Riven has been diagnosed with Food Protein Induced Enterocolitis Syndrome (FPIES), which severely limits the kinds of foods he can eat without having an allergic reaction. Photo by Kelli Boylen.

by Kelli Boylen
freelance writer

Other people kept telling Jessica Winters of Cresco, formerly of Waukon, that her infant son had colic. But, as time passed, she knew that something else was wrong besides a severe case of colic.
Jessica said her son, Riven, now 18 months old, had digestive issues from the time he came home from the hospital. He would cry inconsolably, writhe as if in pain, and he had near-constant diarrhea. She tried breast feeding to no avail, and then tried numerous formulas until they found a prescription formula that worked.
“He never stopped crying,” she says. “People wouldn’t believe that he cried that much.” Jessica stayed home with Riven until he was nine months old.
When he was just two or three months old, Riven developed hives for the first time, and it was suspected that laundry detergent was causing the reaction.
The hives and diarrhea would come and go as they started introducing foods. Riven was diagnosed with atopic dermatitis and then eczema, but Jessica knew there was more going on than just that. “We read all the parenting books, but the things we tried just wouldn’t work," she said. “I knew something just wasn’t right. I became assertive and got a referral to a pediatric allergist.”
The pediatric allergist at Gundersen in La Crosse, WI, Dr. Todd Mahr, thought he knew what was going on, and after several tests made the diagnosis of Food Protein Induced Enterocolitis Syndrome (FPIES). Riven was diagnosed three weeks before his first birthday.
FPIES is an uncommon disorder characterized by an allergic reaction to food in the gastrointestinal system. The term enterocolitis specially refers to inflammation of the small and large intestines which causes sudden, severe diarrhea. Symptoms may last hours to days. Other symptoms can include stomach pain, loss of appetite, vomiting, lethargy and swelling of the stomach. Severe symptoms can cause dehydration and hypovolemic shock. Every time Riven has a reaction he has to go on a formula-only diet for two weeks.
During his first year of life, Riven had croup, RSV (respiratory syncytial virus), bronchitis and a staph-based diaper rash. Although they didn’t know it at the time, FPIES was causing him to have a low immune system.
Jessica, herself, is gluten sensitive and lactose intolerant, but that is a very short list of items compared to what Riven cannot eat.
FPIES is often triggered by milk, soy and rice, but in Riven’s case the list of foods he can eat is much shorter than what he can’t. In approximately 70% of cases, individuals react to one to two foods, but in Riven’s case he is in the small minority that has allergic reactions to multiple things.
After he was diagnosed, Riven was placed on a formula-only diet and then introduced to foods very slowly, based on his doctor’s recommendations. He would try a new food, wait six or seven days to make sure there was no allergic reaction and then try something new.
At this time the only things Riven can eat are sweet potatoes, lima beans, kidney beans and bananas. His prescription formula, which costs $64 a can, is his main source of nutrition. Although he was below average weight when he was young, he is now growing at a normal rate despite his many food allergies.
At one point his family tried giving him eggs, and the reaction was more than just digestion; his breathing got shallow and he was lethargic. They have tried giving him melon, pork, citrus, dairy, gluten, soy and peaches, all of which caused allergic reaction.
“It’s really hard because it’s not a visible illness,” Jessica says. “People think they are being nice offering him things, but that could be disastrous.”
In addition to the FPIES, Riven also has IgE allergic reactions, which are more of a systemic allergic reaction, such as hives, problems breathing and anaphylactic shock.
He has also shown allergic reactions to certain sunscreens, some synthetic fabrics and at one point they figured out he is allergic to the red food dyes 40 and 45 which are used in Benadryl (a common over-the-counter antihistamine).
In his year and a half of life, Riven has been to the emergency room at least 11 times for things like bronchitis that he was not able to fight off because of his weakened immune system, and several times because of allergic reactions to foods.
Jessica has been working to teach Riven to give her food that other people offer him or that he finds. “This is something that excludes him from everyday things because of what could happen,” she says. At a recent family reunion, Jessica placed a piece of tape across the front of Riven’s shirt that read, “Do not feed me.”
There is a good chance that Riven could eat some other foods, and the ideal way to do that would be to do a 30- to 60-day food trial at University Hospital in Iowa City. There they would introduce new foods and have the ability to treat him immediately if there was a reaction. Unfortunately, a food trial like this is considered research and is not covered by insurance.
There is a chance Riven will grow out of the allergies as he gets older, but Jessica says every time he has a severe reaction to a food the chances of that decrease. The family is considering holding a benefit in the future to help fray the cost of undergoing the testing in Iowa City.
For now, Riven undergoes frequent blood testing to check for IgE allergic reactions to try to expand his diet. If the blood test shows a food is a possible non-allergen, he tries eating it. If there is no FPIES  reaction for seven days, it could be added to his diet. If the blood test shows there is a reaction, the food will not be tried again until Riven is five.
Jessica is a single mom who is going to school full-time at Total Look School of Cosmetology in Cresco. She says she decided to share her story because she wants to let others know there are disorders like this out there and there are people dealing with things like this, and to share Riven’s story. “He’s the reason I wake up every day. I’m his voice,” she said.
Riven is the son of Jared Crank, and the grandson of Brad Winters (Patricia Kammeyer) of Waukon, Annika Winters (Paul Lincoln) of Strawberry Point, and Tom and Tamara Crank of Waterville.