Saturday, March 7, 2015
Crying over spilt milk!
About a year ago, I was elected by some avid followers of this bog to respond to a search for speakers at a new Food Allergy Conference in Las Vegas. I was a honored that some people thought that others would benefit from what I had to say, so I began the application. The conference officials wanted a brief, but clear write up of our suggested topics of interest. Mine was clear to me: Food Allergies reactive to ingestion, physical contact ( touch), and/or airborne. I proposed discussing these as distinctive and the socially misunderstood perceptions between them.
I've been a "food allergy mom" for over 5 years. I've watched the progression of my daughters milk allergy start as an ingestion only allergy, become responsive to physical contact, then eventually become highly reactive to airborne milk proteins. I've witnessed the differences, threats, and social understanding ,and lack thereof, so I wanted to share what I've witnessed and learned. In so many ways, I'm grateful for our own journey in our family. It gave us time to figure out how to be food allergy parents. To master label reading and our new found advocacy efforts. It overwhelmed us as we began to see the world with food allergy eyes. It became manageable and we found our groove and comfort zone in our new roles, not only transitioning into parenthood, but more so into food allergy parenthood.
We still related to other parents, not dealing with a serious potential illness with a mistake. We took our daughter to restaurants, other people's homes, birthday parties, bounce houses, etc. With a tiny tot, it's a constant "hovering" approach needed to make sure nothing ends up their mouth. With a milk allergy, that's a tall order with goldfish crackers everywhere. That coupled with little teethers chronic desire to put everything in their mouth is a major responsibility. Germs were the least of our concern when anaphylaxis was at any given moment with any given oversight. I remember feeling so overwhelmed with stress that I couldn't imagine what could be harder. Someone told me how life would get easier as she got older and gained control over her own allergy.
All of our preconceived notions of parenthood were still intact just jilted a bit with fear and insecurity. We learned how to substitue milk protein ingredients and make the same things we would normally make, just in a "safe" version. This is a level of understanding that is an accomplishment, and it's where the journey takes all food allergy parents. It's THE lifeline of food allergy parenthood. Schools, media, the food industry, and social understanding has grown to understand a piece of this desperate need of knowledge and education. The food allergy epidemic is growing so fast that this undstanding literally saves lives and is pertinent knowledge.
For us, however, the journey progressed. Just as we got all of the hidden ingredients actually meaning milk down- became comfortable telling strangers our daughters needs, and going so far as laminating the list of the 66 secret ingredients that actually mean milk for close friends and family, something changed! Our daughter became reactive to physical contact with milk proteins. It happened fast and furious. We retested her allergy panel thinking maybe something new came to traumatize her. Nope just an elevated milk result.
This was a new game changer and a reminder to never get comfortable. Our little girl started reacting to touching the slide at the park. She was so sensitive that a child with milk protein on their clothes could slide down the slide before her, and the tiny traces of proteins left behind would cause a severe reaction in her, just by touch. Mostly her legs with swell with large, itchy hives. Or, her face would start with splotches of red and eventually become a serious case of hives everywhere she touched after touching inanimate objects with transfer milk proteins. I was on it and proactive. I always had leggings on hand and stocked up on little Easter gloves to protect her from contact allergies. A whole new perspective developed and we began to see the world microscopically.
There's so much to add on here. So much to say that exposes the differences from where we started to where we were then. Then more changed. One day at the library with her little white gloves on and leggings under her skirt, a baby being bottle fed had a coughing spell. I had identified the baby and the bottle already and had intentionally been at a 20 foot distance in our tiny little library. As a concerned mom I looked at the baby realizing he or she had probably swallowed down the wrong way and was simply coughing to clear the airway. I looked down at my daughter whose slender face's eyes were almost completely swelled shut. It scared the hell out of me- obviously! I grabbed my then 2 daughters and literally ran outside. Something in me knew she needed open- fresh air.
She had escalated to having a life threatening ingestion, touch, and now airborne allergy to milk proteins. Milk proteins! Think of everything nostalgic to childhood and you'll see milk the way we do. It's everywhere and people don't know enough to realize it. What is culinary pleasure to every American kid is deadly to ours. The differences are bold, dramatic, life-altering, psychologically challenging for her and us. Families are divided or United and nothing in between. School is life threatening and an option we're not willing to place all of our faith in.
So, you see, when I submitted a proposal to distinguish the differences between the three forms of allergic responses, I wanted to speak for a serious and isolating condition within the realm of the food allergy epidemic. I was a little ahead of the agenda. The majority of food allergies are ingestion only and there's a strong force and effort geared at getting a good grip on that version of food allergy. In the meantime, I'll be here managing our lifestyle and educating others in safe behavior and understanding of our level of food allergy, as I have been from the beginning.
Blessing to all who love and breathe in this new world dominated by food allergies, and to the care takers who give their everything to make happy memories and beautiful childhoods to the children who are so misunderstood and unnoticed.