Allergies and Asthma and Epipens… Oh My!

This past weekend, Asa took her first ambulance ride. She also received her first epipen in over 3 years…

I’m not gonna lie, it was scary. We were having a totally normal night at home. Then out of nowhere, she started coughing a lot and then said her stomach hurt. At first we weren’t sure what was going on. I had her come closer to me and could tell that she was wheezing. I got up and immediately gave her her Albuterol inhaler. We’ve been monitoring her for asthma symptoms for the past 6 months or so. She hasn’t been fully diagnosed with it yet, but she’s been having some “asthma-like” symptoms so we’ve been prescribed inhalers and are supposed to use them when she’s sick, develops a cough, or starts wheezing. I knew this was a moment to use it.

We still couldn’t figure out what was going on or what was causing her to start this episode that seemed like an allergic reaction.

Then I started wondering… the stupid cookies I had baked had peanut butter in them. I made them knowing she wasn’t going to eat them and she’s never had an airborne reaction before. To be honest, I wasn’t thinking it would be a big deal. But when she started coughing and acting strange, I realized that the peanut smell was really strong, and if it was that strong, maybe she was reacting to it.

We immediately started opening windows in the house, putting the cookies into a sealed container, gave her Benedryl, and took her outside to breath the fresh air. Her wheezing stopped right after she got her inhaler. We kept monitoring her and asking her how she felt. Eventually she said that the pain in her tummy was now in her chest too. When she said that, I gave the epipen. Ryan called 911.

In hindsight, I probably should have given it a little sooner. I feel like we learn something in every single one of her reactions – whether it’s a small reaction or a big one. You always see a little more clearly when you are looking back at the situation. But still… By the time the paramedics arrived at the house, Asa was acting pretty normal. They listened to her and said that she sounded great and that we had done the right thing. We explained everything that happened and they said a hospital visit was needed to be monitored following administering an epipen (we already knew that drill!).

They had her ride in the ambulance. At this point the epipen had kicked in and her adrenaline was up. When she heard she was riding in the ambulance, she literally yelled, “YES!” and couldn’t get her shoes on fast enough! She was cracking us all up even in the midst of a really scary situation.

At the hospital all of her vitals looked strong and remained that way. When the doctor finally came in, he basically acted like it was almost impossible that she had had an airborne reaction to the cookies. When I explained that I didn’t know what else it could have been, he didn’t offer any other suggestions and instead just said, “Well if she’s that sensitive to peanut you should probably get rid of everything peanut in your house…” (thank you, sir…) and then said, “She looks fine now!” It was almost as if he didn’t even believe she had had a reaction at all. It was frustrating to say the least. But at least she was safe.

The rest of the weekend, I ruminated over the event. I couldn’t stop re-playing it, wondering what had really happened and if there was something I could have done better. Should I have given Epi sooner? Was it really an airborne reaction? Did she have an asthma attack? Did she react to some new food and I didn’t know it? Why was that doctor such a jerk? Hadn’t he heard of good bedside manner?

Today we took Asa to her allergist. After going over the whole event with her, she truly thinks Asa had an asthma attack – a “viral induced asthma attack” to be exact. After she said that, I told her that when we followed up with her pediatrician, we found out that she had an ear infection and this only made the allergist feel even stronger that Asa was probably working through a virus and had an asthma attack as a result. We came up with a whole asthma action plan to add to her allergy action plan. Now she has to carry not only an epipen with her to school, but an emergency inhaler as well. She’s also on a daily inhaler for at least the next month while we monitor her closely.

The allergist made sure to tell me that I did everything right in the event this past weekend. As allergy parents, we are taught to look for certain symptoms, and not to hesitate with the Epipen if those symptoms are present. She said that giving the Epipen is never going to hurt, but not giving it can be deadly, so giving it is always what we should do in these situations! As we always say… “Epi First, Epi Fast!”

The life of a food allergy parent is hard. It’s so easy to beat yourself up – to wonder if you did the right thing and if you should have done something differently. It’s exhausting – both mentally and emotionally. The fear you experience in the heat of the moment, and the sigh of relief you feel after, are so heavy. I walked around for days feeling somewhat depressed just because the weight I was feeling was so heavy.

If you’ve never experienced this before, I’m so happy that you haven’t! And if you have, just know that you are not alone. When I was upset and confused the day after asthma attack, I turned to some allergy communities that I am apart of (and my own social media pages that I run) and felt so supported! It’s a community that none of us want to belong to but we find a lot of comfort in because we know how each other feel and what we are going through. So when you’re feeling heavy, reach out. I’m here for you, and others are too!

Back to her normal spunky self!

Starting School With a Food Allergy

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.

Our big girl on 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.

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.

Adorable Kids Book About Food Allergies!

We found another super cute book about food allergies! It’s based on an episode of Daniel Tiger where Daniel finds out that he is allergic to peaches.

It’s a super cute book that all of my children enjoyed. It also includes cute little rules to follow if you have food allergies. The rules are:

  1. Don’t eat the food that you’re allergic to.
  2. If you don’t feel well, tell a grown-up.
  3. Ask before you eat something new to make sure you are not allergic.

The book can be found on Amazon for only $3.99! Here is the link: Daniel Has An Allergy.

The Anxiety Returns

My son turned 6 months old about a week ago. He’s the final piece of the puzzle to our little family and has been such an amazing blessing! He’s rolling, laughing, and sleeping in his own crib in his own room. He’s growing up and it’s so fun to watch. Every milestone he hits makes me proud and emotional. But there’s one milestone that I’ve been secretly dreading…

I’m terrified of starting to try foods. Up until this point he’s been solely breastfed. As we begin to try solids, my nerves about food allergies start to rear their ugly heads.

We didn’t discover his big sister’s food allergies until she was almost a year old. (To see how we discovered her allergies, click here.) She had also been exclusively breastfed for the first 6 months and she had a hard time learning to eat solids at the beginning. She was a little behind physically for awhile which made eating harder for her. (We got PT for that and it was AMAZING! But that’s a different story…) Because of that, we didn’t introduce allergens super early on. I also had basically no understanding of food allergies at the time so I had no idea about the research about how introducing early can help prevent allergies.

This time, I’m a little more well-informed. There is a lot of research about the benefits to introducing top allergens like peanut and egg earlier rather than later. (For some great links and articles, check out this page of the Food Allergy Research and Education’s website.) When we took Ezra to his 6 month appointment this week, his doctor recommended that we try peanut butter soon.

On one hand, I’m thankful for a progressive doctor that is trying to watch out for him! On the other hand, I’m terrified. I know that we need to do it. And in some ways, I feel more prepared this time around, but I can’t shake the anxiety and fear that comes with it. I’ve wondered since I was pregnant if he would end up with food allergies just like his sister. I’ve wondered what it would be like to have to worry about BOTH of them daily. I’ve wondered what we would do if he ended up with different allergens than Asa and we had to change our lifestyles once again.

Food allergies are one of those things that you don’t really understand until you’re faced with them. As least, I know I didn’t. I knew about them, but only in a hypothetical way. I didn’t know the reality of them. And the reality is plagued with lots of fear, frustration, inconvenience, and sometimes even anger. You wonder why this is happening to your child. You deal with the fact that not many people will understand the daily struggles you face. You pray that one day your child with grow out of their allergies or that a cure will be found.

I will most definitely update after we begin to try foods with him, but in the meantime, please be praying for us as we face a fear!

Brand review! Oat-ly Ice Cream!

Today is my daughter’s 2nd birthday! Unfortunately, we had to cancel her birthday party because the flu has hit our home HARD and 3/5 of us are sick (including her and me). We still tried to celebrate a little with some Asa allergy-friendly ice cream! She absolutely loved the Oat-ly chocolate, non-dairy, vegan “frozen dessert”! Asa is allergic to dairy, egg, and peanut which makes most ice creams impossible for her to eat – but this was perfect.

Also, I tasted it and it honestly tastes just like chocolate ice cream! I think if I served it to people without them knowing they wouldn’t even know the difference! We will definitely be getting this again! Can’t wait to try other flavors too!

*We bought this at Target for those wondering where you can find it!

The Guilt is Real

I don’t know about any other allergy parents out there, but I constantly feel guilty having to talk about Asa’s allergies with other people. On Thanksgiving I had to make an announcement and ask everyone to make sure they washed their hands and their kids hands after they finished eating so that Asa didn’t get touched after someone who had touched one of her allergens. Even while I was making the announcement, I was cringing inside. I hate having to be “that mom”. You know… the mom that seems overprotective and pushy. The mom that wants to tell you how to parent your kid. The mom that has to ask you to take extra steps when you’re around my daughter. I hate it. But I have to do it.

The reality is, that announcement had to be made. I can’t risk my daughter’s well-being just for my anxiety’s sake. But man… it’s hard sometimes.

I can’t tell you the number of awkward moments I’ve had. The countless times I’ve had to ask people to wash their hands. The times I’ve had to remind my friends that their kids’ bottle filled with milk couldn’t be left out for fear my daughter would grab it and take a drink. The times I’ve had to remind the Sunday School workers again for the 10th Sunday in a row that my daughter has allergies and can only have the snack we packed for her. The times we’ve had to give the epipen tutorial. The times I’ve had to ask that my friends put away the peanut butter snacks while we are around. The times we’ve had to wipe down tables/high chairs when we get to a restaurant while other people look at us and think we are just massive germaphobes. All of these times are really hard. Every time makes me feel a little crazy, a little needy, and a lot self-conscious.

Trust me – the last thing I want to do is bring it up. The last thing I want if for you to think I’m telling you what to do with your kid or your life. But I have to. Because if I don’t stand up for my daughter, who will? After all, she’s only a toddler. It’s my job as her mom to protect her and keep her safe. If anything ever happened to her because I chickened out and didn’t give the reminder even just once, I’d never forgive myself.

I’m forever grateful to my friends that go out of their way to make sure their kids only have Asa-friendly snacks when we are around. The ones who text for clarification of her allergies. The ones who offer to order a special vegan cupcake at their child’s birthday party just so that Asa doesn’t feel like out. The family who wipe things down religiously and advocate on our behalf daily. I’m thankful for them because they take some of the weight off me. They make sure I don’t have to ask them to keep Asa safe. Instead, they proactively try to keep her safe themselves. And I can’t tell you how much that means to a mom who constantly feels like a crazy person with crazy requests. We don’t want to live this life. But we have to. So please, I beg you – be gracious. Be understanding. Be considerate. Don’t be afraid to ask questions. I don’t expect you to know everything about food allergies. I know I sure didn’t before we had Asa. I’m still learning everyday. But just know, it’s awkward when we have to ask people to help us keep her safe. And it means the world to us when you try to be accommodating and helpful! It means way more than you know!

Becoming a Food Allergy Mom

On November 27, 2018, we found out that my 11-month-old daughter was allergic to dairy. I suspected she might be after two strange incidents. The first incident involved vomiting violently after eating a new baby puree. When I checked the ingredients of the tub of baby food, I saw that it had pineapple and milk – two things she had never had before. I wondered if that could be a cause but I quickly dismissed the thought and returned to life as normal. A month or so later while eating out at a restaurant, my daughter got ahold of a butter packet on the table. She chewed on it, busted it open, and made a mess. I didn’t think much of it – after all, my kids have done much worse before. But about 10 minuted later, I noticed that she had a swollen upper lip.

At first I thought she must have hit it when the packet exploded. Then my mom brain kicked in – what if this was the milk in the butter? Could she be having an allergic reaction? Again, I sort of dismissed my thought but her lip was only getting worse so we decided to be safe and head to urgent care.

The doctor said that it did, indeed, look like an allergic reaction. My head started spinning. There’s no way she’s allergic to milk, right? Not my kid. We made a follow up with our pediatrician who referred us to an allergist just in case. Two weeks before my daughter’s first birthday (you know… the one where they are start drinking whole cow’s milk…) we found out that she had a dairy allergy. What did this mean??? They ordered us an epipen, quickly taught us how to use it, gave us about 20 sheets of information about allergies, asked if we had any questions and sent us on our way. Did I have any questions? Um… yeah… about a thousand. I couldn’t even wrap my head around this food allergy. No one else in my family or my husband’s family had ever had a food allergy. I had no idea what it really meant. But boy, was I about to find out.

Within a couple months, our allergist had us try a few other foods – soy, egg, peanut. Soy didn’t produce an allergy. Thank God! One down! When my husband tried peanut butter one day while I was at work, he thought we had made it through that one as well. She was acting fine. But the moment I walked in the front door after work, I saw a tiny spot on her skin. We started checking her and the hives literally started spreading before our eyes. We called 911. I had to give the epipen. My daughter was crying hysterically. I was putting on a brave face but inside I was terrified. We went to the hospital to be monitored. Thankfully, the epipen worked and we were discharged within a few hours.

Another month went by and we introduced egg. This time, we were both home when we did it – we were scared to do it alone. Her reaction to the egg was scarier than anything we had ever experienced. She broke out in hives. BAD hives. So bad that they spread to every inch of her body. I called 911 to be safe. I wanted them to check her lungs. While on the phone with them, my daughter started wheezing. My husband and I looked at each other and knew that the epipen was needed. I once again slammed the needle into my daughter’s leg. She once again cried. We were once again terrified. We went to the hospital, as you always should after administering an epipen. But this time was worse.

The hives started spreading again. She was crying and lethargic. She was laying on me and not letting go. I was praying – literally. The doctor said they were going to have to do another round of epi. They went to place the order. I was filled with fear. Why wasn’t this working? Why was she so lethargic? Was she going to be ok? I prayed again – literally. Right before the doctor came back in the room, her hives started subsiding. She started acting more like herself. Thankfully, we escaped having to administer more medicine, but the fear remained.

My husband and I went home that day more scared than ever. It was the first time we had REALLY seen the potential danger of her food allergies. This was more than hives. This had effected her breathing, and that’s something you never want to see your child go through. From that moment on, we became more vigilant than ever. Throughout the past year, we’ve learned a ton. We still mess up. Food allergies are really difficult to navigate. And out of that, this blog/site was born. My goal is help provide support, educate others, and share some tips and tricks along the way! Like it or not, I’m a food allergies mom. I hope this will help some others out there like me!