Saturday, February 8, 2014

My Thankful Post

In case you’re wondering why I keep talking about food allergies...and why I always include a little bit about intolerance and the fact that it is quite different from food allergies and anaphylaxis in there too, it is largely in part to the 4 ER visits (with epinephrine administered) that we have experienced with our 4 year old daughter. 

I haven’t written or spoken much about our nightmare that happened just a few days before Thanksgiving because the images of that night still haunt me from time to time. 

We were eating dinner on the Monday before Thanksgiving. The kids were both so excited because we were going to decorate the Christmas tree and watch Home Alone, as we do every year, right after our meal. During dinner Amery got a few hives on her face which is not uncommon with food allergies. Hives happen on a weekly basis - we give Benedryl and get on with whatever it was we were doing. Of course we wondered why she had hives since there were no known allergens at the table that night. But we figured all would be well. 

The kids decorating the tree.

Our house was high energy as we proceeded to decorate the tree. Everyone in good spirits as the kids giggled as we reminisced about all of our ornaments. Soon after we were finished, Amery told us that she had to throw up. “Ok,” I thought. “This is possibly a 2nd system happening here...” With food allergies and anaphylaxis we are told to administer epinephrine when any two or more systems are reacting (hives and vomiting, hives and swelling, vomiting and coughing or wheezing, etc...). Typically Amery reacts within 0-30 minutes after coming in contact with an allergen. Because a little bit of time had passed since the hives, and they had cleared up, I wasn’t 100% on what to do, so I figured we would watch her and see for a few minutes. 

Now, she had some prior reactions to something new - we didn’t know what yet - so we had been keeping a food journal for her allergist with plans to test again soon. So I began to jot down every single ingredient in the journal in the kitchen while Amery sat on the couch. I was writing for just a few seconds then went and sat beside of her. When I looked at her, the girl who just a few minutes earlier was giggling and dancing, sat pale with her head slumped over and her eyes closed. I picked her up so she would wake up and look at me, but she wouldn’t look at me at all. Her eyes kept rolling back in her head as she would mumble “I’m... just... so... tired.” I was telling her in a “happy” voice to look at Mommy, but she just couldn’t do it. My husband and our eight year old son were also in the room. Chip (husband) had his phone in hand telling me to take her to the ER right away. However, I knew that she was fading. She was not responding and unable to keep her eyes open. I knew in my gut that I had to give her the epi pen shot right then and there. Chip ran to get me an epi pen and I proceeded to give it to Amery. Our son, still there watching all of this, later told us that when everything was happening he knelt down to pray for his sister to be ok. He is the most amazing kid. 

As I gave her the shot, doing everything we had been trained to do, I was crying and whispering in her ear that everything would be ok. Chip was emotional, but at this point was already calling 911 to get an ambulance. This is where is gets tricky. 

The 911 operator asked Chip if we wanted an ambulance or if we wanted to drive her ourselves. In the panic of that moment, we decided we could get to the hospital faster if we just left our house and drove on our own. The four of us hurried out of the house barely making it out with shoes on. Amery was still white as a ghost and not responding - which wasn’t right since the shot typically (the previous 3 times) perked her up and stopped the reaction within a minute give or take. 

Amery in her carseat, was vomiting and still unable to properly respond or look at me. I was freaking out inside for a few reasons. 

  1. In our hurry out of the house, I forgot the second shot. I knew deep down she needed another dose, and I didn’t have it. 
  2. When I looked at her head falling from side to side, saw her face so lifeless, when I asked her questions and got no response, when her eyes would not stop rolling back into her head, I knew she was dying. Wow. That is even hard to type. I had no control over anything that was happening, and my little girl was barely hanging on. 

I was multi-tasking as I talked to the 911 operator who had notified police not to stop us and told the ER to expect us, I was trying to keep talking to Amery begging her to look at me, talk to me... do something to let me know she’d be ok, and I was in constant communication with Jesus on the inside. Praying over my little one to be alright. 

After more meds and staying most of the night in the ER, she was ok. She was ok! Thank you, Jesus. She was ok. 

Amery and me lying on the bed in the ER.

The images from our living room, and even more so the car ride to the ER are forever burned into my brain. They’ve woken me up at night, haunted my dreams... but I am thankful that Amery is ok. She is alive and well. Her big brother, who is so strong, watched everything and was with us in the ER the entire time, thought to pray in the midst of the chaos Chip and I were experiencing. He is so very special. 

Food allergies and anaphylaxis are completely lame. I hate them. I want the world to know as much as possible about the true dangers of anaphylaxis so that kids like Amery can be as safe as they can. Thank you so much for taking the time to read this, and other posts. 

Oh, as for what caused that reaction? Carrots. Yep. A veggie she ate all the time, all of a sudden caused an anaphylactic reaction. 

If They're Not Carrying an Epi-Pen for That Food Allergy, They Probably Aren't Allergic

I would like to (continue to) clear the air where Food Allergies are concerned. 

IF you can say “Every time I eat yogurt __________ happens,” then chances are you don’t have an allergy to dairy. You are likely INTOLERANT to dairy. If you were allergic to dairy, you wouldn’t eat anything with any milk products in it - not even butter used in a baked good, or a food with casein or certain types of lactate on the label, because if you ingested ANY dairy -no matter the amount- your body would freak out, organs would potentially shut down, and you could die within a matter of minutes without a shot of epinephrine

IF you have Celiac Disease, or can say “Every time I eat wheat or gluten __________ happens,” you do not have a gluten/wheat “allergy." You have a gluten sensitivity, or intolerance. I myself suffer from migraines if I eat too much gluten, and from bad stomach cramps if I eat certain types of dairy. I am not allergic to gluten or dairy. If I were allergic to either then the afore mentioned would take place and I would need a shot of epinephrine to save my life. Within minutes in most cases. Minutes

I am not saying this to be rude, but to raise awareness. For the sake of people like my daughter, who have LIFE THREATENING food allergies, please stop calling yourself “allergic.” Call it what it is - a sensitivity or intolerance. If an allergen so much as touches Amery, then she will have a reaction. Sometimes even the smell of an allergen in the air (garlic and peanuts in her case) can cause a reaction. 

Amery being monitored (one of 4 times) in the ER after anaphylaxis and an epinephrine shot

Because the waters of what a food allergy truly is have been so muddied, it is even more stressful on our family and families like ours to eat out. Servers assume right off the bat when we begin to tell them Amery has severe food allergies that she is “gluten free.” Well, no. She is not gluten free. As a matter of fact, bring on the gluten! In her long list of food allergens (milk, eggs, peanuts, tree nuts, beef, garlic, avocado, green peppers, carrots and peaches) wheat and gluten are one the few things she can eat - in large quantities I might add. She is not going to get a stomach ache or other symptoms like so many of the people who claim to be allergic to certain food when they come and sit at one of your tables, kind server. If an allergen so much as goes near her food - if any sort of contamination occurs -- if you touch the ranch dressing then touch her food, or you forget to change your gloves or grab a new spoon in the kitchen, we will be jabbing her in the leg with the epi pen and calling an ambulance within minutes. People need to know just how serious Food Allergies are. These are lives at stake

Because food allergy and anaphylactic families need servers, restaurant owners, caregivers and everyone else who may be around our food allergy kids to be aware of how severe food allergies, not intolerances and sensitivities, truly are, PLEASE, in a world where almost everyone has a certain dietary restriction, stop lumping those restrictions with food allergies. 

Spread the word.