As I was writing Our Food Allergy Diagnosis, I realized that our entire story was much too long and complicated. I really had to break it into bite size pieces. These bite size pieces aren’t because you wouldn’t understand it, but because my emotions have gotten the best of me. As an allergy parent, you’re in constant survival mode. There’s not a lot of time to reflect on what’s happening in the moment, or why it’s happening. We have one goal, one very simple goal, and that’s for our child to stay alive to see another hour and another day!
As you already know, Pig was diagnosed at 19 months with multiple food allergies. What you don’t know is that she had been fighting a “virus” for several months. I put the word virus in quotes, because looking back, she clearly wasn’t battling any virus, she was having an allergic reaction. While she did have your typical viral symptoms like a low grade fever, mucus and a cough, she also had diarrhea..lots of diarrhea, horrible eczema, and recurrent ear infections.
The pediatrician eventually diagnosed her with bronchitis and started her on Xopenex (Levalbuterol) nebulizer (aka breathing) treatments 3 times per day as well as Budenoside, which is a steroid. Xopenex is the pediatric version of Albuterol. But, after about 5 days, we decided she really needed to be seen again. Not only was she still struggling to breathe, she wasn’t sleeping or eating much either. The pediatrician increased her Xoponex dose to 4 times per day.
Day 1. I noticed that after the breathing treatments her eyes were red and swollen (kinda like bags under your eyes), and her cough would actually get worse. I mentioned it to Papá Warrior who agreed but made a good point…maybe she’s really tired, she hasn’t been sleeping and she’s not breathing well. As for the cough, we just figured it would take another day or so to improve. Pretty good argument, right?? So, I dropped it.
Day 2. The swelling continued, but my mommy senses were tingling. I knew something wasn’t right, so I called the pediatrician. The nurse told me to put ointment on her eyes. Um, what!?! I argued that I really believed she was having an allergic reaction, and maybe it was the Xopenex causing it. I went on to tell her that I have a food allergy and know what a reaction “looked like”. She finally agreed to discuss it with the doctor and call me back. {Thank you lady!! That’s why I called!!} A couple of hours later the nurse calls me back to tell me it’s impossible to be allergic to Xoponex, and that because I’m a first time mom that I’m likely overreacting. She told me to just calm down and relax. Say what?!?! What did this lady just tell me!?!? I’m a Latina and we have got some hot blood in us. Albeit, every mama bear has some hot blood in them, am I right? I don’t remember everything I told her, but it wasn’t nice and was likely quite condescending! I mean, who is this lady? Why would you ever talk to a concerned mother this way? Why would a concerned mother’s instinct ever be dismissed in such a vile way?
Day 3. Now, I feel that I have no one to call! No one believes me, and Pig is getting worse. Her cough wasn’t improving, she was having coughing fits, her eyes continued to swell, now bigger and bigger each time to the point the swelling wasn’t really subsiding. I called my husband at work to tell him we were going to the emergency room. Someone has got to listen to me! The ER doctor agreed with me! That’s right, this “crazy, first time, over-reacting” mama bear was right! He explained that there was only a 1% chance of an allergy to Xoponex, and clearly Pig was the 1%. We got discharged with orders to keep her on the steroid, start Benadryl, but remove Xopenex. Back then, when I looked this up, it said 1%. Today, I looked it up, and here’s what it says:
[1] Hypersensitivity: Common (1% to 10%): Allergic reactions Postmarketing reports: Angioedema, anaphylaxis
Did you see that? Not only does it clearly state that up to 10% can be allergic, it also lists Angioedema (eye swelling) as an adverse reaction. Yup, that same pesky symptom that nurse told me to slap some ointment on.
I still have the medication insert from the pharmacy (yup, I kept it in a file all these years!), and it says it should not be given to children under the age of 6. Pig was 19 months! I can’t explain to you if I ever read that back in 2008, but it clearly wasn’t the best idea for my girl.
After we stopped the Xopenex, her eye swelling subsided, and her cough was actually improving. We were so relieved! Unfortunately, my daughter has always liked to keep us on our toes, and just a week later she started getting “sick” again…back to fevers, a runny nose, congestion, a productive cough, and continued diarrhea. Back we go to the pediatrician we go, and on this fateful day, the pediatrician recommends that we switch her from Benadryl to Zyrtec. We were at the point that we would try anything!
Zyrtec in hand, Papá Warrior made a fabulous vegetable lasagna with walnuts. Guess what happened that night? That’s right, she went into anaphylaxis! We don’t know if it was because of the switch to Zyrtec, which had grape flavoring, or Zyrtec wasn’t strong enough for her “silent” reaction, or if it was the vegetable lasagna which had wheat, dairy, and walnuts, but that night changed our lives. Her body had enough!
Looking back now, there was so much that we could’ve and would’ve done differently. But, navigating the medical world with a sick child, trying to follow our instincts while heeding to “expert advice” is never easy. Alas, we didn’t know better, we were trying to keep our heads above water as new parents. So, friend, I want you to hold your head high…you’re doing the absolute best you can. You are doing a fabulous job! Don’t ever let anyone tell you that your instincts don’t have merit. If one person doesn’t listen, find someone who will. Your voice matters.
Subscribe to my newsletter and stick around, because I have so much more I want to tell! If you haven’t read the first part of my story, you can read Our Food Allergy Diagnosis!
Sources:[1]https://www.drugs.com/sfx/xopenex-side-effects.html
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