If you've ever wondered what its like for someone with life threatening food allergies, here is a peek into that life...
-Every time we go out to eat, we have to make sure beforehand that the establishment has special accommodations for food allergies. There needs to be a separate frier, grill, they have to be SURE no cross contamination happens (no allergen foods or gloves or utensils will touch the food Amery consumes).
-We have to be sure that there are foods, that a 3 year old will eat, that are 100% free from peanuts, tree nuts, milk, eggs, beef, and garlic. I'm not sure how often you read ingredient labels, but this is no easy task. Some places the ONLY thing she can safely eat, are the french fries.
-Birthday party treats? Cake? Cookies? Treats? Ice Cream? Most foods you eat everyday? All can potentially take my baby's life.
-If any of us consume ANYthing that she is allergic to, we have to wash our hands and avoid giving her kisses until we have made sure through rinsing, etc, that all traces of allergens are gone. Otherwise, just from our hands or mouths touching her, she will get hives.
-Traveling? Not until we know that we will have safe places for her to eat along the way, and when we have reached our destination.
-Basically, everywhere we go, everything we do, we are on the defense. What would you do if everywhere you went, there were "weapons of mass destruction" so to speak, that could take your life at any given moment?
This is our life.
At 5 months of age, our gorgeous daughter, Amery, had her first food related allergic reaction. Until that point, she had only nursed. I decided one day to mix some of her rice cereal with some formula instead of milk I'd pumped. Luckily, she didn't like it and barely ate one bite. Chip walked in the room as I was burping her on my lap and asked what was on her face. I looked at her and saw hives literally covering her tiny face... and body. Within a few minutes she began to vomit, as her body was rejecting the milk. I called our doctor's office that evening when it happened and spoke with a nurse. We gave her benedryl, had her on close watch, and the next day would conduct our own little "skin test" as instructed by the doctor's office. Sure enough, the next day when i placed the smallest amount of formula on her leg, the area under and around the milk was covered in hives.
Fast forward a few months to District Council in Grand Junction. Not thinking about her milk allergy since she hadn't had anything with milk ingredients since the formula, I gave her a bite of mashed potatoes. She spat it out (I suppose she knew it was bad for her?) and within minutes, the entire left side of her face and mouth was swollen. We hurried out of the restaurant to Walgreen's where I took Amery inside so the pharmacist could see. As we were inside, Amery began vomiting... a lot. I gave her benedryl, and thank GOD she was alright after that. Knowing what I know now, she could have been a LOT worse. Thankfully those times, her little body rejected the allergen quickly so she was able to recover.
Not too long after this happened, I had cream in my coffee one morning, as I always did, before nursing her. I placed Amery in the baby seat in the bathroom while I took a shower. When I got out of the shower, I noticed through my blurry-no contacts yet-eyes that she looked different. When I got closer, her lips were swollen like the Nutty Professor. From the cream in my coffee! ...For those of you who have wondered why I drink my coffee black...here is where it started. Give up cream (along with other dairy products) or give up coffee? I chose to KEEP the coffee! Now I LOVE it black. :)
All dairy regarding Miss Amery was O-U-T.
August 12, 2010... I was fixing scrambled eggs. Amery was almost 11 months old, so I let her try some. Within minutes, just like the very first time she tried formula, she had hives all over and was vomiting. At this point, we made an appointment with the allergist. I figured if she had reactions to milk and eggs, there had to be more. And, what am I supposed to do? I'd heard each reaction can potentially be worse than the one before, so what happens when it wasn't just hives and vomiting (for those of you who are food allergy aware, this was a one time throw up deal - rejecting the food. Again, thanking God she was alright. Back then, I just didn't know what I didn't know).
Upon telling the allergist our stories, and confirming those reactions with testing, we also found that peanuts was on the list. This was alright since she was a baby and wouldn't be eating peanuts anyway, but how was I going to avoid all products containing any milk or eggs? Asher and I had been gluten free for about a year at this point - not for an "allergy" but for a "sensitivity" (There is a difference between food sensitivity, intolerance, and a life threatening food allergy. These differences have unfortunately muddied the waters for those children and adults who can die from exposure to an allergen. Much different than stomach swelling, aches, cramps, migraines, etc.) so I knew that I could handle it. Let's face it, I had no choice but to handle it. This was her life at stake.
As you read above, there are quite a few new allergens on the list. Aside from the tree nuts and peanuts (although they are the biggest allergens she has, she has never been exposed to any of these, which is pretty scary for me - they were found out through testing.) all of her known allergens were first discovered at a meal - she would have a reaction, and I would take the entire list of ingredients to her allergist and have her tested to see what the culprit was.
Every person that watches her has to be shown how to use the epi pen, should she come in contact with allergens. And, until last week, I honestly never thought we would have to use epinephrine.
I knew she had life threatening food allergies, of course, but the thought of her ever coming into contact with something was so distant in my mind. I learned a lot this week.
This past Wednesday, Amery ate a cookie with milk and eggs baked into it when nobody was looking. I am so thankful that her teachers responded quickly - this made all the difference. Chip and I were panicked since we had no clue what was going to happen. We watched her closely and within 30 minutes she went from a few hives and a swollen lip, to red and swollen all over, coughing repeatedly, and unable to breathe. I took her to the ER and almost immediately upon seeing her, they hooked her up to a monitor, weighed her, and gave her a shot of epinephrine in her arm. Amery only cried for a few seconds after her shot. Within 25-30 seconds of the epinephrine, every single symptom from the reaction disappeared. I wish I would have videoed, although that was the last thing on my mind at the time. She was nauseas for a little while, but after that passed, she was alright. We were in the ER until about 3:00am as they have to monitor for a minimum of 4 hours after a shot of epinephrine (we stayed about 5 1/2) to watch their heart rate that speeds up, and to be sure that the symptoms don't come back and a second dose of epinephrine is needed.
The ER doctor again reviewed Amery's Food Allergy Action Plan with me. This is a set-in-stone plan that everyone caring for her has to follow should exposure happen. No panicking - like i did the other night! The doctor also reiterated the fact that seconds and minutes count. She shared a story of a recent incident when a 6 year old little girl had an exposure and did not have her epi pen on hand for whatever reason. By the time the EMTs arrived to the scene, she was gone.
On Thursday, after the adrenaline wore off, I broke down. I was a basket case. The reality set in that we could have lost her if we didn't respond in time. My children, just like any parent, are the MOST precious things in the entire world to me. It became so devastatingly real how close we can be to losing her at any given moment. Over food of all things. I hate that.
Things I learned this week - Even when we think our bases are covered, they aren't. She is always at risk, and I have to live with this in mind. Although my hope is to not have any exposures, I have to live as though there will be more, and myself, and everyone that cares for her have to be trained and knowledgable in how to respond. I will not send to her to a school (EVER...or at least until she is old enough to avoid contact on her own) unless they can PROMISE me that she will not be in contact with ANY known allergens, and they have a nurse on site who is WELL trained in food allergic reactions, and of course, prevention. The only way to be sure exposure doesn't happen, is to only have safe foods around her.
Things I ask of you who are around Amery....
- Do NOT feed her ANYTHING unless Chip and I have said it is ok.
- Wash your hands before you touch her.
- Keep a watchful eye out to be sure that you don't see her with any foods that could hurt her. As a matter of fact, just let me know if you see her with any food :-)
- Remember that she is 3 and she wants to eat the fun treats she sees your child eating. Please be nice and wait until she isn't around to give your kids the things she cannot have.
- Please don't bring snacks for everyone (kids) that she can't eat. No matter what.
- And please don't seclude her or take your children away from where she is to get treats. Thats no fun.
- Please include her. Just ask me for help. Its not as hard as you may think. There are a lot of fun, easy treats she can have that all kids love (Oreos is one of them!).
- If we are somewhere eating together at a home, a restaurant, or a party, respect her boundaries. Make your children aware of these boundaries. Please don't put your child beside of Amery if their hands and face and areas around their plates are messy, or are going to be messy, with foods that are not safe for Amery. This is an exposure just waiting to happen.
Maybe I left some things out. Maybe some of those seem overboard. I don't care. Her life is FAR more important to me than anything anyone might want to eat. Everyone who has ever complained about accommodations for food allergy kids should think about that. Nothing is as important as a life. Especially not food. From here on out, I have to be "that" mom. I saw firsthand just how close we are to losing her. Since nobody, including myself, is able to watch her every single move, we have to work together to make sure she stays safe. Thank you for helping us!
I am more thankful for her precious life today more than ever before. She brings joy and laughter to everyone she meets.
This is our life.