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.

Advice for new food allergy parents!

A couple weeks ago, I went to my social media platforms and asked for people to send me what their advice for new food allergy parents would be!

I had over a dozen people send me their advice. I wanted to make sure to share them all on the website as well because we got some really great ones! Which one resinates with you the most?

Super Simple Fried Ice Cream!

Ever wanted friend ice cream but didn’t want to mess with actually having to deep-fry something? Well look no further! Here is a super easy 5 minute recipe! Added bonus – you can even make this vegan!

Ingredients:

  • Vanilla ice cream of your choosing (I used a vegan ice cream to keep it allergy friendly!)
  • Corn flakes (or you can substitute Frosted Flakes or Honey Nut Frosted Flakes)
  • Sugar
  • Margarine or butter (again, I used a vegan margarine to keep it allergy friendly)
  • Honey and/or chocolate syrup

Directions:

  • Scoop out your ice cream and put it in the freezer.
  • Add margarine, corn flakes, and a bit of sugar to a small pan and sauté the corn flakes for a few minutes. If you choose to use Frosted Flakes or Honey Nut Frosted Flakes (like I did here!) you can skip the extra sugar.
  • Lay the corn flakes onto a plate and gently roll your ice cream in the corn flake mixture. You can use your hands to add extra of the corn flake mixture into your ice cream.
  • Drizzle with honey (pictured), chocolate syrup, or any topping of your choice. You could also add whipped cream and a cherry if you want to get extra fancy. 😉

This super simple treat is so yummy! Enjoy!

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!

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!