anaphylaxis – Food Allergies Mom

Asa starting preschool this past Monday. (It’s Friday night as I’m writing this.) I have so many things to write about but I’ve honestly been putting it off because I’m a little overwhelmed and exhausted by it all.

We knew this day was coming. She turned 3 in December and the plan was to enroll her then. With COVID, we decided to delay that start date a little. We finally felt it was the right time to send her, but our nerves on the allergy front haven’t lessened at all. How could they, really? This is the first time that she has ever really been with anyone other than our parents. We have left her in church Sunday school before, and honestly, even that brings me anxiety! But this is a whole new ballgame. Dropping her off, out of our sight, with complete strangers, knowing that we can’t be there to watch her every move is completely terrifying. It’s unlike anything I can even explain. If you have children, you know the anxieties that come with the first day of school. Now take those anxieties and amplify them by 100. Maybe that can help give you a little taste of what I was feeling leading up to Monday.

We tried to be extremely prepared. We contacted the school months ago and I met with the principal to talk about our concerns. (Reminder that Asa has 3 major food allergies – milk, egg, and peanut.) That led to a conversation with the school nurse to develop an individualized health plan to go over what to do in case of an emergency. We agreed that Asa’s EpiPen would stay in her backpack with her in the classroom at all times so that it would be readily available in case it was needed. We agreed that 911 as well as my husband and I would be called immediately if they even suspected she had been in contact with an allergen. We went over the snack list and agreed that we could send in our own snacks from home just to control exactly what she could have. She would be given soy milk instead of normal milk in the classroom. We sent over her allergy plan from her allergist. I even took time to label her EpiPen cases clearly with her allergens. We felt as prepared as we possibly could be, but the anxiety and fear was still there.

I bought her EpiPen cases from PracMedic and labeled them with her allergies myself using vinyl and my Cricut 🙂

Monday came and Asa was SO excited to start school. She had been wearing her backpack around the house for at least a week and was so excited that she was going to school just like her big sissy. She couldn’t wait to use her new water bottle and go meet her new teacher. She was excited and filled with hope. We were excited but also filled with fear. I tried to occupy my brain by making her a shirt for her first day. She wore it proudly and looked adorable when we dropped her off for her first day.

After dropping her off with tears in our eyes, my husband and I both started saying that we still felt slightly unsettled. While developing her health plan with the school we had asked about having all of the kids hands/mouths washed or wiped down after snack time to ensure that no allergens were left on them after they ate and drank. We were told that wasn’t really feasible. It wasn’t sitting well with us.

I posted on Facebook about Asa’s first day of school and asked for people to be praying for our anxieties and for her to be safe. A fellow allergy mom reached out to me and asked if we had a 504 in place. My response was basically, “A 50-what?” I had no idea what a 504 was. A 504 for food allergies is essentially a kind of written management plan that is very commonly used for several kind of disabilities or health conditions including food allergies. More information on them can be found here. She advised that we work on one immediately as they are legally binding and are more official than the individuated health plan we had already created (which was still a great first step).

I immediately started looking up information. I also posted in a local group on Facebook to try to find other food allergy parents in our school district who already had 504s for their children to see if they would share their experiences with me. I was in the luck! I had one of them immediately message me and then ask if she could call me. She talked to me like we had known each other for years. The food allergy community is amazing. Once you have a child with food allergies – you just get it. You understand the struggles, the fears, the constant worry, and you just empathize in a way that makes you want to help others. She told me that part of her child’s 504 includes his classmates washing their hands after they eat every single time. (That was funny since we were told that wasn’t feasible.) She armed me with a lot of great information.

I reached out to the principal, the school nurse, and Asa’s teacher immediately. We set up a meeting to discuss a 504 and talk about our concerns. In the meeting with them, I started by saying that I didn’t ask to have this meeting because I thought they were doing a horrible job. I was actually really impressed with the way our district handles food allergies and think that they are leaps and bounds above other school districts in this matter. I thanked them for their help so far. I then told them that they needed to understand that one small accident could lead to my child’s death. I explained that it’s hard for me to feel confident leaving Asa in anyone’s care when I don’t even fully trust myself. I have to double and triple check every single thing I give to her because I never know when I manufacturer that I trust is going to change their recipe or change their factory and make it unsafe for my daughter. I am constantly concerned that one little slip up could result in an anaphylactic reaction. I also explained that in her 3 years of life we have had to use an EpiPen 2 times. I said that the last thing that I wanted was for a teacher or a staff member to have to administer an EpiPen to her. It’s stressful and scary and I didn’t want them to have to go through that. I tried to be firm and blunt but understanding and caring in my delivery.

They were so incredibly helpful. When we brought up the hand washing this time, they didn’t bat an eye. In fact, they took it a step further and said that it may be better to just remove the allergens from the classroom altogether. (YES, PLEASE!) They are writing up her 504 right now and we will have it completed in the next couple of weeks. With the 504, it will follow her throughout the district as she moves up in grades but will be adjusted every year based on her needs, so we will have these meetings yearly.

I wanted to write all of this out because I thought it was important information for others to have. I know that we are all in various stages of our food allergy journeys. Maybe you aren’t even a food allergy parent, but you are reading this to be informed, and if you are – thank you! Seriously, from the bottom of my heart, thank you. When I posted in the Facebook group asking for allergy parents who have made a 504, I had several people comment telling me “504s aren’t for allergies” or “just talk to a principal”. Many people were immediately dismissive of me for absolutely no reason. It was incredibly disheartening. Along with that, I had a lot of allergy parents come to my defense and offer their support and help. I hope that this blog if one of those resources to those of you fighting this fight. I know the fears you face every day because I face them too.

I have still been spending this week thinking of even more ways to keep Asa safer. I added more visuals to her backpack to remind people of her allergies.

Got these lanyards (left) from Target awhile back so I turned it into a tag for her backpack! I have extras so if you want one – hit me up and I’ll send one to you! The little EpiPen clips (right) were purchased from Amazon here.

I don’t think that will ever stop. I’ll probably always be innovating new ways to make her allergies more known so that she is safer at school. For now though, she made it through week 1 and I feel more empowered after advocating for her and using my voice to speak up! I’m also super thankful to the food allergy mom who called me even when she didn’t know me because she encouraged me to do just that! (Shoutout Kristin!) And special thanks to Sarah who is always a huge support for me and messaged me about the 504 in the first place!! You’re a rockstar!! If you have questions about anything I mentioned in this blog, please don’t hesitate to reach out! Or if you just want to vent or talk, I’m here for that too.

A year ago today I had to administer the epipen for the first time.

My husband texted me while I was at work to tell me he was going to try peanut butter with our daughter for the first time. About 3 weeks prior she had officially gotten diagnosed with a milk allergy. They sent us home with a ton of papers about food allergies, an epipen prescription, and anxiety. I was still trying to wrap my head around what a food allergy really looked like. No one in either of our families had ever had a food allergy before. They told us to slowly try some of the other major allergens throughout the next couple months and to keep the epipen on standby when we did. In my mind, there was no way we were going to have to use it.

My husband was texting me while feeding the peanut butter to her and said it had seemed fine. No reaction! I left work and headed home. When I walked in the door I greeted my baby girl like always by picking her up and giving her hugs and kisses. After just a couple of minutes at home, I noticed what looked like a small hive. I asked Ryan if he had seen it. It had been over an hour since he had given her the peanut butter. No way it was from that, right? We continued to watch her and check over her body. Hives began to spread. I called 911. While I was on the phone with them explaining what was happening, the hives got worse. They were EVERYWHERE – even in her diaper. It was worse than any hives I’d ever seen. I told the 911 dispatcher I was going to administer the epipen. She agreed I should. An ambulance was on their way to our house. With Asa sitting in my husband’s lap, I took a deep breath and gave the epi. She cried. I was on the verge of crying too. Within a minute of that, EMTs were walking into our house. Her hives slowly started disappearing. They checked her lungs. The epipen has worked!

We took Asa to the emergency room at the direction of the EMTs. You should always go to the hospital after administering an epipen just in case there is a rebound reaction after. Thankfully, she stayed well and we were sent home a few hours later.

Photo of her hives after giving the epipen and arriving at the hospital.

Suddenly the realization that we may not be done discovering her food allergies hit me. I was even more scared. I wasn’t prepared for this. There was so much I didn’t understand.

I was instantly thankful for the epipen. I was thankful for modern medicine that kept my daughter safe. I don’t wish having to administer an epipen on anyone. It was scary. But it was also very quick. Sure, Asa cried… but her tears were short-lived after the initial shock of what had just happened to her wore off. And the relief that she felt almost instantly made the fear of giving her the epipen disappear quickly. People are often scared or hesitant to give the epipen. But the safest thing you can do at the sign of a reaction, especially if two or more allergic reaction symptoms are present, it to give it! The person will not be injured if given epipen when it wasn’t truly needed. But the consequences of NOT giving it can be life-threatening. Always error on the side of caution. It could be the difference between life or death.

It wasn’t the last time that I’d have to give her the epipen, but I’ll save that story for another day.

*For a general overview of how to administer an epipen, click here. There are other brands that may vary slightly, but the basic rules for administration of them are the same!

Tag: anaphylaxis

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Using the Epipen…