With the prevalence of food allergies today, you would probably not consider a child with food allergies to have a rare disease. With the diagnosis of food allergies, as long as the child does not ingest the food that they are allergic too, they will be fine. This doesn’t seem like anything to worry about if you are looking at it from the outside.
But what if you discover that your nine month old son is deathly allergic to barley?
On July 31, 2011, the Bucci family had a terrifying night as their son Jacob went into anaphylactic shock after ingesting food that they did not know he was allergic to.
Jacob’s mother and father, Linda and Joe Bucci, learned that Jacob had the severe food reaction to barley. Barley is found in whole grain breads, cereals and caramel coloring to name a few. Jacob recovered from his ordeal in the hospital and Linda and Joe began the process of following up with Jacob’s primary care physician and an allergist. As a first step, the parents removed all traces of barley from the home.
Jacob underwent allergy testing and his parents learned that Jacob was allergic to barley, wheat, eggs, tree nuts and peanuts. All of these foods could result in another anaphylactic reaction. They quickly removed eggs and nuts from their home environment and learned how to use an epi-pen.
In an effort to keep Jacob healthy and provide nutrients to her son, his mother Linda decided to continue breastfeeding and followed the same diet as Jacob free of all of the allergens that were discovered.
Six months later, in February 2012, Jacob was retested to check again to see what his allergenic profile looked like and not only did he not outgrow any of his major allergens, he also tested positive to soy, milk and mildly to some types of fish. This includes seven out of the eight Food and Drug Administration’s major allergens.
The roller coaster ride the Bucci family is on is just not as simple as avoiding a food and moving forward with life. Jacob had a recent scare (March 2012) where he was fed a gluten free, nut free, dairy free “butter” on safe tapioca bread he has eaten in the past and he broke out in hives throughout his body.
This is why I consider little Jacob to have a rare disease. He doesn’t just have a food allergy. He doesn’t just have to avoid peanuts. He can’t be near peanut dust. He can’t eat candy, eggs, regular bread, pasta. He can’t have dairy substitutes like soy cheese or soy milk. He can’t go through the McDonald’s drive through where a typical meal of chicken nuggets and fries are all dangerous to him. He can’t eat pizza. His latest reaction was to a product made with sunflower seeds and he is likely allergic to these as well.
His mom Linda feels that one of the more limiting aspects of having a child with severe food allergies is the contamination issue. A trip to the grocery store for one item can turn into a big project. With free cookies given out in many stores, mom has to carefully wipe down any cart that her son sits in. She has been told that even contact with any of his allergens can result in anaphylactic shock. Attendance at playgroups or visiting friends with kids is just not practical at this time due to all of the possible contamination.
Despite all of these things, Jacob is thriving as best as possible. He is a happy toddler blissfully unaware of the challenges that lie ahead. His mother Linda and father Joe have been brave enough to allow us to share the story of Jacob and we hope that together we will be able to provide information and advocacy to other children who are struggling with life threatening food allergies.