Tag: allergic

Allergies and Asthma and Epipens… Oh My!

foodallergiesmom

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!

Preparing For a Food Allergy Challenge

foodallergiesmom

Tomorrow Asa goes in for her second food allergy challenge. This time we are doing a macadamia nut challenge. I spent hours tonight making macadamia nut butter. My child better always know how much I love her! 😉

I’ve had a lot of people ask me to explain what exactly a food allergy challenge is and why we do them, so I decided to write a blog about the subject. A super common misconception about allergies is that a skin test or a blood test can tell you everything you need to know. Unfortunately, this just isn’t true. Skin tests and blood tests are good indications of allergies but they aren’t 100% accurate. The only TRUE test for a food allergy is actually ingesting it. Typically an allergist will begin with a skin test to see what shows as positive. From there, they will try to confirm the allergens with a blood test. A good allergist will only test you for things that you’ve already reacted to or that are in the same family (for example, you’ve reacted to one tree nut and so they test you for all of them). Most allergists will not run a full blood panel just to see what comes back positive because too many false positives can occur.

A good example of this is exactly why we are doing the food challenges right now. Asa tested positive on a blood panel to tree nuts. Her cashew and pistachio levels came back EXTREMELY high on both a skin and blood test. Some of her other tree nuts came back with really low numbers that are kind of inconclusive. She could be allergic, but she also could be just showing a false positive. For example, she also showed with some positive numbers to almond which she eats constantly and has no reaction to whatsoever. Her numbers to almond were very similar to her numbers for several other tree nuts, so we decided to do some food challenges for these other nuts in the doctor’s office, in a controlled environment, where she can be monitored closely and given medicine and treatment immediately if needed.

Back in February she did her first food challenge for walnut. Essentially what happens is that they give her walnut or walnut butter in doses that increasingly get bigger every 15-20 minutes. During those times they monitor her closely for any signs of an allergic reaction. Once we even had to wait an additional 15 minutes between dosing because she got the hiccups which can sometimes be a precursor to vomiting (who knew!) and they wanted to be sure it wasn’t a symptom! After her last dose, we have to sit in the office for 2 hours for them to continue to monitor for a delayed allergic reaction. If she still stays symptom-free, she is considered “passing” and is allowed to eat the food freely from then on! The visit takes about 4-5 hours total so it’s a long day at the office!

Another difficult thing to point out with the nuts in particular, is that you have to prepare either the nuts or the nut butter ahead of the appointment because nuts and nut butters that do not have any chance of cross-contamination are extremely hard to find. For example, with her macadamia nut challenge tomorrow, we have to be sure that she is ONLY eating macadamia nut and that there are no traces of any other nuts on them because that could obviously totally change the outcome of the test. Because of that, we have to wash the nuts. Yes, you read that right… we have to literally wash them with Dawn dish soap! Not once… not twice… but three times! Then we have to roast them. You can choose to eat them raw for the test, but we know Asa won’t do that, so we choose to make a nut butter out of them instead. That literally took me hours tonight because the nuts were not cooperating with me. Now I just have to pray that Asa cooperates tomorrow and eats all the doses and most importantly, doesn’t have a reaction!

As you can imagine, challenge days bring a lot of anxiety with them. While I’m so incredibly hopeful that she will pass and we can mark another nut off the “not allergic” list, there is always a part of me that is nervous that we could end up having to give her an epipen, go to the hospital, or worse. And that thought is very hard to shake. If you’re a praying person, your prayers would be much appreciated! I’ll update this post once we go and get results, but for now, please keep us in your prayers and pray for her bravery as well!

I hope this post provided a little knowledge and also helps you see the lengths that allergy parents have to go to for our kids! Being an allergy parent is not for the faint of heart, but we fight every day and our kids do too!

Making macadamia nut butter like a champ… 🙂

Starting School With a Food Allergy

foodallergiesmom

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.

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.