This is our families personal account of our daughter’s food allergy diagnosis and how we have been navigating it since. We aren’t perfect as you will see and have made mistakes along the way. However, we have learned valuable lessons through this journey about how to safeguard her. Our story is to not only spread awareness, but also to support other parents as they navigate their child’s diagnosis. Please be kind if you find error in our ways of handling things or would do differently. I also have another article coming soon called navigating your child’s food allergy with tips and resources for those needing support.
My husband was in the Army and we were with him in South Korea. I was pregnant and there were threats of war from North Korea. If the threats became a reality, then the Americans would be shuttled out by boat.
Nearing the end of my second trimester, my husband did not want to risk his daughter and I evacuating by boat to safer shores.
We quickly made arrangements to move back stateside. My husband got some time off and escorted us back to America to stay with an aunt in Colorado.
We landed on February 14th, tired and exhausted, but mostly unsure of what was going to happen next.
Our days and nights were flipped from living on the other side of the world. Therefore, we were up during the middle of the night trying to encourage our circadian rhythms to re-adjust.
My sweet little 2-year-old daughter was naturally having a hard time that first night and was ready for dinner at 4am.
Trying to help her settle without waking up my sleeping aunt, we grabbed an apple pie Lara Bar. She was happy to have that since it was her first time eating one and, well, it was like a treat to her.
Unbeknownst to us, we were about to find out that our little girl had a life threating food allergy. She ate the bar and was ready to “rest” but moments later she began to have discomfort and seemed fidgety and unsettled.
We turned on the light to help her again and saw her face was breaking out in red blotches around her mouth and cheeks. Not only that, but her lips were more than doubled in size!
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Panic struck my heart.
My husband and I both recognized she was having an allergic reaction. We didn’t have a car, so I woke up my aunt. Being the manager of a grocery store, she called her pharmacist. He told us the dose of Benadryl we were to administer to my daughter. We ran to the store grabbed the medicine and administered it immediately.
The Benadryl didn’t take it away, but it did seem to stop it from getting worse. We monitored her airway closely and were ready to leave for the ER at a given moment.
Frantically, we reviewed all the things we had given her that day and then analyzed the Lara Bar. That was the last thing she had before the outbreak of intense hives. It had to be the walnuts in that snack.
By 11 am the next morning, she was still so swollen and also very sleepy. So much guilt overcame me as I looked at her precious little face. Many negative thoughts raced through my mind and countless “what ifs” took root.
After many hours, the hives faded and she was ok.
My husband had to go back to South Korea and I, pregnant and alone, had to navigate this life threating issue my daughter was facing.
A positive food allergy diagnosis.
A few months later my second child was born.
After that birth we moved to Utah to stay with my sister, when I was just five days postpartum. This is an entire story in itself.
I was then able to get her into a specialist. He tested her for allergies to walnuts, tree nuts, and other common food allergens.
Her results were in, and the diagnosis was that she would need to avoid all tree nuts for the rest of her life – especially walnuts. He warned that her reaction would be worse each time. He sent us home with EpiPens.
I was a mess.
Having a background in nursing didn’t help as much as you would think. Not enough is taught to nurses about those diagnosed with a food allergy. So I was emotional and unsure how to navigate all the life changes necessary to provide safety and wellbeing for my daughter.
The weight of it all overwhelmed me.
How would I be capable of being able to monitor every single thing she ate?
Did this mean we would never be able to eat out again?
How could I ever feel comfortable eating at a friend or family members home again?
Saying I was overcome with worry is an understatement. I was drowning in it.
Those first few months were so hard. I cried a lot. We then had to move again. Thankfully a friend took us into her basement apartment until the summer ended.
There I could control her diet and make everything homemade.
My husband came to visit and we went to get ice cream together. Unknowingly, the ice-cream scoop was contaminated with tree nuts. Thankfully, she didn’t require the use of the EpiPen. Benadryl helped and her airway did not become obstructed.
Her life-threating food allergy event.
At the end of September 2018, my husband was returning to America and we were moving into our home in Colorado. We were able to settle in with a provider and stop bouncing around.
Now fast forward to November 2019 and my husband is away with the army (again). Oh, and I am pregnant (again) in my third trimester with my third baby. Somehow my daughter was exposed to something that caused a reaction.
But this time it turned into an emergency.
Benadryl wasn’t working, in fact it was making it worse, more on that later. Now her airway was at risk. I got the kids in the car and we went to the emergency room.
The ER doctor was amazing. I had brought the medicine I was giving her. She did a thorough assessment. Confirmed her throat was swelling. Then together we made a decision on how to move forward.
I was afraid to administer epinephrine.
I had concerns based on my knowledge of its side effects when obtaining my bachelor’s degree in nursing. Her airway was open enough that we had time to discuss her situation.
The doctor and I talked it over and then informed, made the decision that it would be the best route for her situation. It was the hardest decision I have made on her behalf. However, the risk of her airway closing was high and it seemed logical that the next step was necessary for her safety, for her life.
She screamed in pain as the epinephrine was administered. There is just something so terrible about seeing your child in a state that you feel you have no control over.
I wished so much in that moment that she didn’t have a food allergy and that this wasn’t going to follow her for the rest of her life. To this day she is still traumatized about that visit and the pain she experienced. However, I really believe it did save her airway from closing further.
The doctor had discussed with me that the Benadryl I was administering had Red Dye 40. She then explained that RD 40 can cause allergic reactions to become worse!
At this point in my life, I had no idea that harsh dyes were in medicines! Let alone that it could intensify an allergic reaction. You can imagine I carried a lot of guilt over this. Just like the Lara Bar, I had unknowingly caused a terrible situation again.
She got better and we were able to go home. Stress and concern to eat out or go anywhere consumed me and I didn’t like taking her out to eat anywhere.
Caring and loving friendships.
Thankfully we had amazing friends that became vigilant about potential exposure to the foods she was around. Life was great, we had our tight little community of close friends that honored and really looked out for her in regards to reading labels and putting things up for us if we came over for a visit.
It’s funny because at times I felt like we might be a burden to others to make requests to accommodate my daughter’s food allergy. However, my friends never made me feel that way. In fact, they were kind, understanding, and above all, lovingly concerned about our daughter’s situation. They loved her and genuinely wanted her to be safe.
I will never forget the peace and love I felt from those in our lives that have made such efforts to support and safeguard my daughter’s life.
Life moves us again.
2022 rolls around, and sadly, we were moving again. Starting over and making new friends is hard enough, let alone trying to find friends that will take on the burden with you to keep your child with a food allergy safe.
Regardless, we had to settle in as quick as we could because I was nearing the due date of my fourth baby.
We were attending church and begin to share our story quickly because every single Sunday was a church potluck.
During a church potluck, there was a cake that seemingly looked innocent. I inspected it and asked if there were any tree nuts in it. The person who bought it said no. So, I sliced a piece for us to share and brought it back to our seats.
My husband took a bite and with haste said, “Ashley! There are walnuts in the cake!”
My heart dropped. I was so close to giving my daughter some on her plate. By the grace of God, we avoided a life-threatening event right there in church. It turned out that the person didn’t really know but said no.
The next year in August 2023, my daughter had an exposure to what we think might have been a cross contamination. It wasn’t bad enough to take her to the ER, thankfully, but we don’t know what caused it.
Stress consumed me over church pot lucks for a year. However, before we made the decision to stop going to potlucks, an event touched my heart so deeply.
Community concern touched my heart.
A child in our local homeschool co-op of hundreds of members, has a tree nut allergy like my daughter. Before a group event that involves food, the leader of the co-op makes a request to those participating in the potluck to avoid bringing anything containing tree nuts.
When I say I almost broke out in tears at the first event we ever attended, I really almost broke out in tears.
How kind this large community is to cater to the need of one child effected by this. They get it, and I feel so blessed to be a part of the community.
The seriousness of a food allergy.
What do going to events that have food provided, getting invited over for dinner, or going to potlucks all have in common? They feel like we are playing Russian Roulette with our daughter’s life.
After a year of being somewhere new, my husband and I are in agreeance that we should avoid the pressures of attending events with food provided and potlucks. However, we know there will be rare exceptions to this, and now we have a plan for those times.
Knowing that we will be reducing her exposure to cross-contamination and direct exposure to her food allergy brought me instant peace and relief when making the decision.
I learned my first year after moving that I lacked boundaries. Although not related to food allergies, this article about setting boundaries helped encourage me.
Here is a great example that anyone could relate to:
If you knew that a person had a loaded gun laying around their home, and they didn’t put it away, and it was in reach of little kids, would you go to their house? Of course not! It wouldn’t be worth the risk of your little kids getting hold of that gun and having an accident. Regardless of how well you trained them to not touch guns.
I realized that my daughter’s food allergy is the same. Regardless of how intelligent she is about her food allergy and no matter how much I teach her to not touch or consume tree nuts, an accident might happen.
Her health and safety are far more important than attending social events. Especially when lack of understanding or education of her allergy isn’t known. Even worse if it is known, and care or caution are not first and foremost.
Hope she will grow out of her food allergy.
I am forever thankful to my dear friends in Colorado that made valiant efforts to help protect my daughter. Reading labels with me and placing tree nuts up high (just like they would remove a gun from out of reach).
I am so thankful to be a part of this kind homeschool co-op too! My spirit has been lifted seeing how much a group of people cared for that other little kid. I know that my daughter’s needs will be respected as well.
It is also important that I state that I am not upset with any of those who don’t know or have exposed my daughter unknowingly to her food allergens. I also understand that many in her world truly forget because they don’t deal with it daily.
Ways to help families with this lethal diagnosis is to put the food away just as you would for a weapon. It’s really not too much to ask and will be an enormous way to show love toward that family! An example would be removing food containing walnuts from a table rather than setting them out for a higher chance of cross contamination.
As of writing this in 2023 we are scheduled to get her retested and are hopeful that she will grow out of it. The allergy specialist we saw in Utah said that it’s a 14% chance that she will. I know that’s not very great odds, but I have a lot of hope and have over the years changed many things in our diets at home to support a healthy gut and immune system. But until then, we will be doing our best to safeguard her and set boundaries as we continually navigate this.
A man that hath friends must shew himself friendly: and there is a friend that sticketh closer than a brother.