I've found there's something similar among all the allergy mom's I've met. We've all experienced trauma. The initial food allergy reaction is traumatic. It's unexpected. It's heartbreaking. It's overwhelming. It changes who we are as mother's. It changes our families. It changes our roles + what's required of us. It changes who we are as people + how we see the world. I'm going to share a little about the trauma I experienced with our peanut allergy diagnosis here.
I'm sharing this story because you never know what someone has been through. My experience isn't the same as everyone else, but I bet we have a lot of similarities. Food allergies are often seen as a "special diet" or a "special accommodation" + often looked to as a burden. But, every family I know that lives with allergies would erase them in a heartbeat if they could.
These photos of my sweet little 15 month old Bowan have sat on my camera's memory card for two years + haven't seen the light of day. I took these photos because I thought I might want to remind myself that it wasn't in a horrible dream, that this indeed was reality. But, I didn't want to go back + revisit this hospital stay. Part of me has wanted to erase this experience. That isn't possible. Instead, I'm going to share about my experience to help myself heal a little more + to hopefully help the new + old allergy families out there.
In April of 2015, I took my tiny little 19 pound, 15 month old to have his blood drawn for IgE allergy testing. He had a reaction to a tiny amount of peanut butter + I wanted to confirm the allergy. Additional foods were included in the labs, like avocado, as he had gotten whole body hives from his first taste of this infamous superfood. I was shaking the entire way to the hospital, dreading this experience. I really didn't want to face the situation, but I knew I had to. Bowan sat calmly in my lap, he didn't even flinch during the poke or blood draw. He never even shed a tear. He was so strong. I tried to be as strong as he was, but I didn't want to be.
Later that week, I got a call from our pediatrician's office that the blood work results were in. The blood work confirmed an anaphylactic allergy to peanuts + eggs. He was also high to avocado, cat + dog. Deep down I absolutely knew Bowan had a serious allergy to peanuts, but my heart actually broke confirming this. I could actually feel my heart break. I can't describe it, but I can still feel it.
There were some really unfortunate things about this phone call. The most concerning was that our pediatrician delivered the news of the food allergies but did not call in a prescription for an EpiPen to our pharmacy. They told me to make an appointment with an allergist + they would prescribe an EpiPen. I was a wreck wondering what I'd need to do if an emergency were to happen in the seven days leading up to our appointment.
I was still nursing Bowan, so what I ate impacted him. He would eat very little solid food on his own + nursing was his primary source of nutrition. After this phone call, I put so much pressure on myself to learn what foods were safe for him. I was so discouraged to see that all of our gluten-free flour in our pantry was labeled "made on equipment with tree nuts." I felt like nothing was safe + I had so much learning to do. The allergist's office made it clear that Bowan needed to be free from anti-histamines for a week prior to our visit for the skin testing to be valid. So, I would have to be extra careful with what I would feed him + with what I would eat. If he had a reaction, it would push back our allergy testing.
That Friday night, after the phone call, I finished making cupcakes for a baby shower. I didn't eat any, I was too afraid. The package read "may contain tree nuts." Blood work is drawn by weight. And, there were other foods in question that were not included in the blood work but needed to be confirmed through skin testing. I don't think I was able to think straight at all. I was crushed + didn't know what to do or where to start.
The following day, Saturday, we went to a neighborhood birthday party. It was a really rainy + wet day. I have a dog dander allergy, but I am rarely bothered by it after completing environmental allergy shots years ago. But, that night my throat felt tight + I could really feel the dog dander impacting me. That night, when we came home, Bowan seemed congested + I thought, the dog dander must have really impacted him as well. My mind was spinning + I also thought to myself, don't start overreacting over everything.
Sunday morning, I went to a yoga class. That was the best thing I could do for myself. Sixty minutes alone, a chance to get a hard workout in + an opportunity to be reminded to breathe. The class was super challenging, just what I needed. I came home soaking wet in my own sweat + felt more positive + refreshed. Until I walked into our kitchen. I greeted Breck + Bowan playing garbage trucks on the wood floor. Bowan's breath seemed to be labored + with fresh eyes, I knew something was wrong right away. I took his Onesie off + his skin looked bluish-purple + I was able to see his skin retracting under his ribs.
One thing I have learned as a mom, is that if one of my children has a health concern, I need to think: can I fix this situation at home, or is there nothing I can do at home to help my child? I thought: no, I'm pretty sure there is nothing I can do. So, I called the Children's Hospital line, they asked for Bowan's symptoms... The nurse said, your son is showing all the signs of respiratory distress, you need to have him here within the 1/2 hour.
I ran upstairs, changed into dry clothes, threw a few things into a bag. Then, headed to the hospital. Once we got there, I was still questioning myself as to if this was an emergency. Maybe he was fine? Maybe I was totally over reacting? Maybe this wasn't even reality?
Once we were in the room, the doctors assured me that Bowan was in the right place + he needed to be treated for respiratory distress. They first tried steroids. If he responded to the steroids, we would know it was allergy or asthma related. He did not. He was then diagnosed with RSV + was put on oxygen + was monitored. He was on oxygen for the required amount of time. (I think that was 3 to 5 hours). But, he was not improving + was working very hard to breathe, even with the help of the oxygen.
The doctor decided Bowan needed to be transferred to the main Children's campus downtown Denver/Aurora. At that point, it was the middle of the night, maybe 2 am + they placed tiny Bowan onto a stretcher with oxygen + we rode in an ambulance to the hospital.
I was so scared + angry to be in the ambulance. I felt like it was just a prelude to our new life with food allergies. I couldn't help but think this must be the start of hospital visits + ambulance rides. I was so overwhelmed + all alone. The ambulance ride was the first nap Bowan had that entire day. He slept so peacefully as a tiny little baby on the big stretcher.
I think the worst part of this experience was arriving in the E.R. + hearing a child scream as we arrived. That child screaming was screaming because something was seriously wrong, they were in serious pain. It broke my heart. I was so overwhelmed, the entire experience was just breaking me down.
We were admitted to a room. The nurses assured me that Bowan needed to stay in the hospital. They told me that RSV can be common for babies + toddlers, yet it is very serious. The nurses let me know we'd likely be in the hospital 3 days + that we were on the floor where we needed to stay quarantined to our room, as RSV is highly contagious.
During those 3 days, Bowan slept with me on the pull-out Bed, attached to oxygen. He cried in the crib, so the nurses let him sleep with me. I held him in my arms as I tried to sleep. Even though I was completely exhausted, I barely slept as I kept checking on him all night. On our final day in the hospital, he finally slept on his own as we were being discharged. I took these photos + tried to process this experience.
I remember thinking this hospital stay was very similar to a hospital stay after the birth of a baby. In that, the doctors + nurses were in + out all day. It was completely chaotic. One morning, Bowan was sound asleep on our little bed. I got up + started to wash my sweaty yoga hair in the sink with the antibacterial hand soap. A doctor came in at that point + I don't think I ever rinsed out the soap + I kind of dabbed it dry with the paper towels. I remember feeling like everything about the stay was chaotic.
I barely ate while we were in the hospital. I didn't know what I should order, there weren't many gluten-free or vegetarian options for me. And, when the food did arrive, there was some kind of interruption. I remember truly feeling like I was starving while we were there. It was a horrible feeling + it amplified all of my other negative feelings.
Another difficulty that we faced was that our pediatrician's office was closing on Wednesday, so I had to find a new office + schedule follow-up appointments while we were in the hospital. I remember feeling extra stressed that we had to find a new doctor in the middle of this.
We were finally discharged after our 3 day stay. Bowan came down with an ear infection on our final day + needed antibiotics. I was so discouraged, yet happy we could go home. That evening while at home, Bowan had his dose of antibiotic, my husband gave him a bath while I laid in bed. When he brought Bowan to me, I thought something's wrong again. He looked blue + purple, but I thought he must be really cold after the bath. He nursed, then projectile vomited all over me. I've never experienced anything like that. I knew something was very wrong. His body was limp + he kept throwing up. I called my friend that was an experienced allergy mom. Right away she said... Call 911. Within hours of arriving home, we had an ambulance + fire truck at our house. Bowan had an allergic reaction to the antibiotic. He threw it up + did not need any additional care. But, I surely could've used the Epi Pen in that situation, but I didn't have one yet. We went back to the hospital, they assessed him + changed his medication.
The following day we had our appointment with the allergist. I was so thankful to get more answers + hopefully a little more help. The allergist always checks vitals before skin testing. I was heart broken when he said, we can't skin test today because he has pneumonia. We were then prescribed a nebulizer + steroids to give Bowan for the following week to help the pneumonia pass. We also finally got the EpiPen prescription.
Another week went by of carefully eating, reading labels, researching companies + emailing companies to learn about the manufacturing processes. We finally did get in for skin testing the following week, he was clear of pneumonia + we also learned of Bowan's tree nut + sesame allergies.
Following this experience, I became very depressed. It surely took time for me to process the situation + educate myself about food allergies. I was sad + angry that I threw away or gave away our entire pantry. It felt like I was cooking all day + creating recipes. I shut down my Etsy shop + stopped working. I read a lot on gut health. And, in November of that year, I attended Fablog Con + met other like-minded food allergy moms. It's been a long road, but I am surely on the other side. There will always be dark patches, but this experience has strengthened me.
If you are working through a new diagnosis, I strongly encourage you to find a counselor that can help you work through the complexities of the diagnosis + lifestyle changes. It was extremely helpful for me to practice EMDR treatments. As, my counselor helped me walk through an emergency allergy situation to help me feel prepared + to help me to rid it from my mind so I wouldn't feel like it was haunting me. I would have nightmares that Bowan would find a peanut in the corner of our house or under the coushins of our couch. I was afraid I wouldn't be able to take my eyes off of him even in my own house. What if he found an allergen that I didn't know was there? She empowered me to know that deep cleaning my house was a realistic + proactive thing to do. And, sure enough, I did find some peanuts in one couch + it was a smart + safe thing to do.
If you know someone that is going through a new diagnosis, ask them: how can I help? Listen. Even the smallest act of service will be more impactful than you'd ever know.