Food Allergy: Nico's Story
Imagine living in a world where you can’t enjoy foods like other people, and some foods are actually your enemy — even potentially deadly. It’s becoming increasingly prevalent for many kids. In fact, two out of every 13 kids in a classroom have some type of food allergy. This is true for little Nico, who from birth showed signs that he was a much different baby than his easy-going sister.
“My daughter is 13½ months older and was just a happy, healthy baby, nursed like a champ,” explains Nico’s mom, Paige. “She was eating entire slices of pizza and rolls of sushi by like 7 months old.”
But Nico always seemed uncomfortable, as if he was a bear itching on a tree. For his first year of life, he wouldn’t sleep for longer than 45 minutes at a time due to the intense itchiness from eczema, which is a chronic skin condition commonly affecting babies. Nico’s eczema, however, covered most of his body. He often tried to scratch his back during diaper changes. He wore mittens on his hands because he was always scratching his body. And he could rarely be set down without screaming in such a way that Paige describes as “bloody murder.”
“There was something clearly wrong with him. It wasn’t normal,” Paige says. “One time I was in a store, trying to nurse, and he was crying so hard that his belly button started to bleed because he was arched in pain screaming.”
Desperate for answers, Paige turned to her midwife, who is also an International Board Certified Lactation Consultant. She suggested perhaps Nico has food allergies and her breast milk was affecting him. By the time he was 6 months old, Paige stopped eating a variety of known top food allergens: dairy, wheat, soy, eggs, tuna and nuts. She took Nico to a few allergists seeking answers between New York, and their eventual move to Florida, and they finally found their way to Johns Hopkins All Children’s Hospital just over a year ago.
It was perfect timing as the new Food Allergy Clinic at Johns Hopkins All Children’s had just opened. Nico became one of the very first patients.
“At that point, he was labeled with being allergic to several foods, including eggs, peanuts, several tree nuts, chick pea, coconut, flaxseed,” explains Panida Sriaroon, M.D., medical director of the Food Allergy Clinic.
First Nico would have skin and blood testing to see if he had outgrown any of his allergies. Next would be a series of oral food challenges to see if and what his body reacts to while being monitored by a team of experts, ready to spring into action if an allergic reaction occurs. Most reactions are treated in the clinic, but because the clinic is in the Outpatient Care Center, across the street from Johns Hopkins All Children’s Hospital, the team is poised for an adverse reaction, even if it requires going around the corner to the Emergency Center.
“It’s been a completely life-changing experience,” Paige says. “But it’s terrifying. The team in this clinic understands the gravity of it because it’s not like getting a cavity filled, but they still make it as comfortable as they can.”
Four-year-old Nico has completed more than six food challenges with some life altering results. During these food challenge tests, a patient is given small doses of a food he or she might be allergic to over a period of two to four hours and monitored for reaction. One was a huge success, proving Nico, who was once anaphylactic (allergic in a way that could cause death) to milk and dairy, could finally consume them. This meant enjoying one of his now favorite foods, pizza, and a step toward some sense of normalcy.
“There are a lot of patients who cannot eat straight dairy, but they can tolerate baked milk. In Nico’s case, we had him try baked milk in cake form first, which he tolerates, then we tried straight dairy next,” Sriaroon explains. “With some foods that are thoroughly cooked, the protein structure changes, which allows the patient to eat it without reaction. Now we’ve cleared him to eat pizza, and it’s life changing — he can go to a party and eat like all the other kids. It’s a lot for the family. This opens doors.”
But one food challenge visit with cashew and pistachios resulted in a serious reaction, requiring epinephrine injection and emergency response from the Johns Hopkins All Children’s Hospital Emergency Center team. It was frightening for Paige, but Sriaroon says this is why it is important to be surrounded by pediatric-specific health care professionals, who are trained and prepared for life-threatening reactions.
“I could not have had a better team of professionals with us to handle it,” Paige recalls. “They were super calm, wildly calm, through it all. Dr. Sriaroon walked us through the entire process and it felt like they had control over it. I cannot speak highly enough about the food allergy clinic team, as well as the emergency department team that transported and stabilized him.”
While Nico will likely repeat allergy testing and oral food challenges for some time, Paige is grateful for the care from a team that speaks her language of food allergies. She admits life isn’t easy for kids with food allergies and their parents, but passing a food challenge is a milestone and something to celebrate. She admits it takes a lot of advocating and planning, but it is a diagnosis that deserves more attention and conversation surrounding it.
“It’s a lot of educating and encouraging people to ask me questions,” Paige says. “Finding the Johns Hopkins All Children’s Hospital Food Allergy Clinic has been the best thing that has happened to us.”
Sriaroon says while it’s unclear why food allergies among kids are more prevalent now, it is a very complex condition. “We wish we knew why it’s rising, but we know this is still mainly genetic. Forty to 60% of kids could have an allergic condition if one parent has this, and up to an 80% chance if both parents do.” It could be related to the environment or have something to do with Westernized lifestyles such as the hygiene hypothesis that the developed countries tend to be “cleaner” and thus, our bodies start fighting something normal such as foods.
While little Nico may not be able to tell you each of his food allergies, he can tell you the scientific name of each and every dinosaur — perhaps a now pizza-eating paleontologist in the making. And that feat makes everyone a bit more at peace and hopeful for his future with food.