Connecting the celiac disease and food allergy/intolerance community together by sharing our stories to food freedom. From our beginning struggles to striving after a diagnosis, we can all relate and help each other out by sharing what we’ve learned and our unique personal journeys.
Mistie so bravely reached out to me with her story a few weeks ago and again, I had tears in my eyes reading this raw story of just how severe, life threatening, and changing food allergies are. You know that May is Celiac Awareness Month, but this specific week in May (8th-14th) is Food Allergy Awareness Week. The food allergy story that Mistie has offered to share with us about her baby son Tanner, is so powerful (the images will have you in tears!). The horrifying and shocking night that changed her families life can only be described as a nightmare for any parent to wake-up to. You will not leave this blog post without a new realization for the seriousness of food allergies (if you don't already have one!). The story and photos are all courtesy of Mistie and she has allowed me to share them with you.
"My son’s name is Tanner. He is 3 years old. We have no family history of food allergies. We were very unaware and oblivious when it came to understanding food allergies.
On December 9th, 2014, Tanner was 2 years old. We had received a Christmas goody tray full of different sweets from a friend that evening. I had placed the covered plate on the kitchen counter and went to get the kids tucked away in their beds. Tanner had just recently switched over to a toddler bed from a crib. In the early transition to a toddler bed, he might wake up and wander to our room in the middle of the night. That night he did wander, only he didn’t make it to our bedroom, he wandered into the kitchen.
Around midnight, as my husband and I were lying in bed, I heard a hacking cough. As a Mom, you often hear coughs and sneezes in the night. They don’t all make you get out of bed. This one did. This one made my Mom ears perk up. I got up to find the source of the hacking cough in the dark house. I first went to Tanner’s room and found it empty. Panic hadn’t set in…just curiosity as to where he had made it to before he fell back asleep.
Then another hacking cough.
Panic slowly started creeping up. Where was he?! I started turning on lights now, quickly going through the house. Finally, I found him sitting in the kitchen, the plastic wrap on the goody tray partially open, and then my panic exploded.
He was sitting in front of me his face was splotchy, his hands were red and swollen. He was coughing, gagging, and drooling all at the same time. His nose was running and he was sneezing repeatedly.
In his hands he was holding a caramel cashew turtle that only had a few small bites gone.
As my brain tried to process what was going on, it took just a few minutes more before he started hiving and his face swelling. Now he was trying to vomit and choking. He was clawing at his face and chest, and was wheezing.
I yelled for my husband, and we called 911.
Fire, ambulance and police showed up. The ambulance gave him epinephrine and steroids on the way to the hospital. This is when we first heard the word 'anaphylaxis'. Thankfully, we reacted quick enough and made it to the hospital, because my son had what is called a 'biphasic anaphylactic' reaction. Which means he had a second reaction hours after the first, (without taking in any more of the allergen) his heart rate elevated, the reaction started all over again, and required additional doses of epinephrine.
This was all a shock to my husband and I. We have no family history of food allergies, and this is our youngest child. . . We were clueless. We literally Googled “food allergies”, “anaphylaxis”, “biphasic anaphylactic” while sitting in the ER.
Tanner spent two days in the hospital being observed, tested, and coming down from the swelling and hives.
His tests later showed that he is allergic to cashews. We avoid all tree nuts. (I even had to ask what were tree nuts and did they differ from peanuts. Which I would later find during advocacy is a very common question.)
During our learning process I discovered that eczema can be a sign of a food allergy or intolerance. Tanner has had very bad eczema since a newborn. Requiring prescription medicines, but food allergies, or even intolerances, were never mentioned.
We continued to see pop up reactions, not anaphylactic, but other reactions. I took him to his allergist and insisted there was something else. Possibly cats or dogs, through the process of elimination a cat or dog always seemed to be present when he had a reaction. However, my concerns were brushed away, a test (although easily done in a few minutes) was not administered. I then sought out a second opinion, and the test was run. Yes, Tanner is also very allergic to cats.
I have learned through this process, to trust my instincts. No, I am not medically trained. However, my husband and I are the only people on this planet who know our children better than anyone in every way. And that matters.
Tanner, sweet Tanner. Beyond learning his ABC’s and 1-2-3’s we also do flashcards to learn what different tree nuts look like. He has to learn which adults he can rely on to give him food. Every adult wants to help a sweet face toddler reaching for a cookie at a barbecue, but can he trust that this adult knows he has a severe allergy and has checked that food for him? He has been learning to carry his own small backpack with his EpiPens in it, and be responsible for it. Tree nuts are one of the four top 8 allergens that tend to be lifelong. Also, teenagers and young adults with food allergies are at the highest risk of fatal food-induced anaphylaxis. Instilling these simple habits in him early, I hope will make for easy transitions into upcoming school years, and stick with him lifelong.
Truthfully, food allergies don’t rule my son’s life. Yes, there are things he cannot have and we have to be on guard for his allergens. Yes, he has to learn self-responsibility a bit different than other children. However, we cannot remove his allergens from the world. Many people have personal struggles that they have to triumph every single day. Thankfully, his is very manageable."
I told you this was a powerful one! But look how Mistie has cared for Tanner and turned this new life into something they can life with. I love the flashcard idea she uses and how she is teaching Tanner, at such a young age, the important knowledge he needs to take care of himself as well. It's so important to prepare your children as quickly and effectively as possible about their allergies. Mistie is also very involved in her local FARE chapter (find your local support group here!) and she also happens to be a blogger (not related to food allergies).
Mistie hopes that by sharing her son's story that you learn to trust your instincts as a parent and do everything possible to find the answers you need and keep your family safe as best you can. Thank you SO much Mistie!
So tell me:
+ Are you a member of any local allergy support groups?
+ Any questions for Mistie and Tanner?
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