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An Open Letter to the Public

My heart feels like someone is crushing it and I almost feel I am struggling to breathe. I have held myself together all day, but now that my two-year old daughter is home and safe a flood of every emotion is rushing over me: sorrow, frustration, judgment, heartache, regret…

I have seen my tiny little girl go into anaphylactic shock so many times. I should be a pro by now, but I am not.

“I spilled coffee.” she said as she came running after me as I was going to my room to dress before taking my eldest to school.

“What?” I looked at her stunned.

My thoughts begin to race, “Where did I leave my coffee? I know I poured it a half-hour ago. It shouldn’t be hot, but her arm looks burned.”

I panic thinking, how could I be so stupid to leave my coffee out where a two-year old can reach it. I looked and the coffee was where I left it, where I thought it was safe, in the middle of the kitchen island. I forget that my two-year old is in the 100th percentile for height.

 If only I could turn back the clock.

I give her a cool bath and wonder if I should get her to the doctor or call 911. The hives emerging on her right arm and trailing down her chest answer the question.

It isn’t a burn. It is an allergic reaction, but to what I wonder?

My coffee creamer says it is dairy free on the label. Regardless of what caused her to react I administer her epi-pen and I dial 911.

I know what comes next and I am still not ready for it. I took a class on preparing for the hospital when your child has food allergies and I’ve been working on my emergency kit, but it isn’t ready.

If we are stuck at a hospital, we cannot eat there and I know it is NOT a safe environment for my child with severe and multiple food allergies. Hidden allergens are in medications, IV drips and lingering on the hands of hospital workers who have been sipping their morning latte and munching on doughnuts. The last time we were in the ER she broke out in a rash from the linens. I was glad I had already packed sheets washed in a safe detergent for her to sit on.

Most parents fear predators or their child getting hit by a car, but for me it is food. Unknowingly people leave traces of food everywhere, on shopping carts, park benches, and traces of allergens are lingering on hands.

My daughter suffers with life threatening allergies to dairy and egg and also has an allergic reaction to 14 other foods. I’ve seen her eyes become swollen and bloodshot accompanied with a runny nose, coughing, hives and breathing difficulty from a kiss laced with dairy.

Before I knew she had food allergies, I made baby food in the same blender I mixed up vanilla malt in the night before. The result was watching my daughter turn blue and vomit from cross-contamination of dairy and egg in a blender when she was only 10 months old.

Today, her allergic sensitivity continues. She seems to break out in hives from anything in packaging. I often wonder if cross-contamination causes her break outs or if she’s allergic to preservatives or something in the packaging.

Her allergist doesn’t know why putting a Mr. Potato head lips in her mouth caused severe welts all over her mouth, but I can tell you that it did…three separate times.

My coffee creamer boasts that it is dairy-free, so why the severe reaction?

Did you know that even if a food label boasts Top 8 Allergen Free it might not be? The FDA does not require food companies to list possible cross-contamination with allergens. I could make myself crazy trying to figure out what actually caused the reaction.

“I think you should find a good doctor and explore why you’re daughter is reacting so severely to everything. It appears her immune system is on hyper-drive.” the ER doctor commented. “Parents seem to think these reactions are their fault, but they are no one’s fault. It is just some type of hyper sensitivity, but if you don’t find some answers you guys might be here in the ER every week.”

I knew his words were true. I know something is wrong, but I can’t seem to get any help or any answers. I want someone to listen to me. I want someone to understand something is wrong. I don’t care what the other case studies say about allergies, this is our reality. This IS really happening to us and I need answers.

I thank the Lord that she is okay. Every moment she breathes is a miracle to me. I am hoping we can find her the help she needs so she isn’t having so many severe reactions to everything in her environment.

For now, please just understand and have compassion on our family. Pray for a cure, a miracle. If I am ever with you and you notice I don’t give you eye contact, it is because I am watching her. If I seem overzealous, it is because I remember the time I turned my back to hug a friend…for only a moment and she had her hand in another child’s zip lock baggie of snacks at the park. If I refuse your invitation for a get together that is focused around food, please understand that putting my daughter in the environment of her food allergies is no different than playing Russian Roulette.

Our family has worked hard to educate ourselves and protect my youngest since we discovered her food allergies when she was 9 months old. I have done everything in my power to protect her from harm while also giving her a “normal” life outside of our home. My hope is that we will find the right doctors to come to her aid.

As her mother I am ready and willing to fight, but I need the correct tools.


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