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!

Preparing For a Food Allergy Challenge

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… 🙂

Adding more foods to our “no no” list…

The past two weeks have been extremely hard for me. I’ve been really wanting to talk about them while simultaneously wanting to crawl in a hole and hide.

I found out that I have Celiac Disease. If you’re like a lot of people, you may be asking, “What’s that?” For a great, thorough definition of it, click here. The short definition is, my body can’t process gluten correctly and when I eat it, it’s damaging my small intestine.

I’ve known something was wrong for quite some time. I went and saw a new gastroenterologist last July and he did bloodwork that pointed towards Celiac. He ordered a colonoscopy and endoscopy but due to insurance issues and a multitude of crazy one-offs, we had to reschedule the procedures multiple times. I finally had them two weeks ago and it confirmed that I did, indeed, have Celiac Disease.

Since then, I’ve been feeling a multitude of emotions: anger, sadness, and disbelief mixed with a little bit of relief to have an answer for the pain and discomfort that I’ve been feeling for so long now.

But the anger and sadness has been a little overwhelming. We already have to read so many labels. We already have to avoid so many foods. My daughter, Asa’s allergies mean that we already have to avoid peanut, milk, egg, and multiple tree nuts. Adding gluten to this long list just seems overwhelming. So many recipes that we have perfected now have to be changed all over again.

I’m angry at the additional cost this will add to our grocery bill. For example, gluten free bagels come with 2 less bagels in the package and cost literally $3.00 more… It’s insane! Our bill is already so high from the dairy-free milks and creamers, egg-less noodles, and special almond butter we have to order to make sure it’s not cross-contaminated. Now it’s going to go up even higher? Why is this happening to us?

Then there’s the sadness over the foods I will miss. It may sound trivial, but let’s be real… food is a part of our culture. We base so much of our life around food. I was joking that I don’t even feel like a true St. Louisian anymore because I can’t have Imo’s pizza, toasted ravioli, or gooey butter cake anymore. Who even am I? Not to mention that I can’t even drown my sorrows in my normal comfort foods because they are no longer things I can eat! It’s just depressing.

I am well aware of all of the amazing foods that exist that are gluten free now and I’ve already tried a lot of them! I am working my way through the stages of grief and will get to acceptance. I know that there are worse things in life than having Celiac Disease. But I also know that right now I need to feel my feelings, and that it’s perfectly acceptable to do so.

Changing your food habits is HARD. All of you in the food allergies community know this first hand. Altering recipes, finding new brands, researching companies online, looking up restaurant menus ahead of time, checking labels in the grocery store… all of it can be extremely stressful. But just know what there are others out here fighting the same fight with you. This community has been wonderful for me. And you’ve helped me navigate through my daughter’s allergies for 3 years. Now I hope you’ll help me navigate through my own food journey too!

My and my food allergy buddy. I told her we are in this together til the end! #myminime