This is a post about my son Daniel, who is now 13 years old. It is a story about his journey through life with food allergies. Settle in for a bit, this is another long post.
*Warning some language in some areas of this post*
When I was pregnant with my middle child Daniel, I noticed that the pregnancy was different than when I was pregnant with his sister. Certain things that I would eat would make me violently ill, but I really did not put much thought into other than to avoid the things that made me sick. After Daniel was born and he was 6 months old, I asked the doctor what I could do to help him sleep through the night better, the doctor told me to put a little bit of cereal into the breast milk and give it to him before bed. He said that this should allow him to feel more full and sleep longer.
I went to the store and purchased some cereal that had a bit of formula in it too, figuring that it would also help to fill his little tummy up for longer periods of time. We returned home from the store, I put his sister down for her nap and was preparing a bottle for Daniel, I wanted to give it a try before bedtime just in case it did not sit well with him. I gave him his bottle and he drank it all with no problems, I thought to myself ‘This just might work!’ However, within about 5 minutes things were not fine at all.
His little face started swelling up, hives broke out all over his body, his lips started to swell and were turning blue, I turned him on his side while still holding him in my arms and he proceeded to vomit all over my legs and the floor. I quickly stood up and rushed to my medicine cabinet, all of these signs indicated my son was having a severe allergic reaction to the cereal I had just fed him. I was calm but panicked at the same time, I retrieved the children’s Benadryl and give him a double dosage for his size, I stripped him down and placed him in a witch hazel bath, I was trying to see where all the hives where at, at this point over 80% of his tiny little body was covered in hives and swelling. The Benadryl was kicking in and his lips were now pink, his breathing was returning to normal. I picked him up out of the bath and dried him off, I then covered his hives in hydrocortisone to help them decrease even more. At this point, my calm was beginning to wear off and my anxiety was full throttle. I put a diaper on him and wrapped him loose in a blanket to keep him warm but not too warm as I didn’t want to further aggravate the hives or chance messing up his breathing again.
I grabbed the can of formula/cereal and my phone and I dialed my mother who is an LPN, I told her everything that happened and what I had done to treat it, I told her I thought he was allergic to the formula in the cereal because Daniel had had rice cereal before with no issues at all. I skimmed over the ingredients and compared them to the ones on his normal cereal and the only thing that was different was Whey. ” Mom, do you think he is allergic to the Whey in the formula part of this cereal?” I asked her with my voice still shaking and my heart now ringing in my ears. ” It is possible, though that is not something people are usually allergic to.” She responded. I took a deep breath and told her I was going to call his father at work and let him know we needed to take Daniel to the doctor and that I was worried. She agreed with me and we ended our phone call.
I called my then husband at work and was trying to convey what just happened with our son, I tell him everything that I had told my mother, from the reaction to the immediate treatment I had given our son in our home to which he responded “He isn’t lactose intolerant, stop your worrying, I am at work and I will get home later.” I was furious with his response and I replied: ” You are damn right he isn’t lactose intolerant, that was an anaphylactic response you moron, now get home so we can take our son to the doctor!” He went silent on the phone for a moment then said ” Fine, I will see what I can do.” We hung up the phone and I waited and waited and waited, I got our daughter up from her nap and dressed again, I dressed our son dressed in loosely fitting clothing to not agitate his skin. I turned on the TV and for our daughter to be entertained while I waited on their father to get home and the phone rang. I picked up the phone hoping it would be him telling me he was on his way, but it wasn’t, it was my mother calling back to check in on us.
I relayed to my mother what their father had said and let me just say, she was not happy. I told her what the plan was, and if my then-husband did not get home in time that I would make my son an appointment in the morning, that I would keep a close watch on him for the rest of the day and evening. I also let her know I would be avoiding that cereal at all costs to make sure that is what it was. She reluctantly agreed with me and we said goodbye on the phone. At this point, my car was not at our house it was located in another state at my then-husbands mother’s house. So we were stranded unless I called for an ambulance, which at this time we did not need. My son was stable, his heartbeat was good, his breathing was not labored, his skin was pink and not hypoxic, and the rash had disappeared.
I brought the bassinet out of my bedroom and put it in the kitchen, I laid our son down in it and I began to cook dinner while I was waiting. It seemed like forever before their father walked into that door. As soon as he stepped inside he walked over to the bassinet and picked up our son, he looked him over and said: “This is what I rushed home for?” he put our son back down in the bassinet and walked into the bedroom slamming the door.
He would reemerge from the bedroom about 45 minutes later, now from the time I called him till the time he actually arrived home it had been about 5 hours… Not so much a rush if you ask me. When he did come out of the bedroom, I had dinner fixed for him and the children had eaten, I was getting them ready for bathtime. He said as he looked at me with one child on each hip… “Don’t ever call me at work like that again, unless you are at the ER already. This was a waste of my time.”
I gently put the kids down in the crib that was in their bedroom and shut the door as I walked back out of their room, I looked him in the eye and said ” Don’t you EVER speak to me that way again about OUR children. He almost died in my arms, and had I not known what was going on with him he could have. You are lucky as hell that your wife, the mother of your children recognized what was going on and saved your son’s life. Now, I made an appointment to take him to the doctor first thing in the morning, and I am calling your commanding officer to tell him you are taking the day off tomorrow to take us. If you don’t comply with my requests, I will call my mother and she will be her first thing in the morning.”
I spun on my heel and walked into our children’s bedroom with the phone in hand. I punched in the number to the shop on base and requested to speak with the commanding officer. Yes, I followed through with what I said. I told the commanding officer what was going on and he reassured me that it was not a problem at all, for my husband to take all the time he needed to ensure that our son would be okay.
We arrived at the doctor’s appointment and they ran several tests on Daniel, his father sat in the corner and pouted as our two-year-old daughter would often do. They said that his tests all looked good for his breathing, his heart, but they did not want to do an allergy panel on him because he was still too young. They told me that we should just avoid the cereal/formula that caused the reaction and that I was CORRECT it was indeed an anaphylactic response to something in it.
After the doctor said that, I spun around and looked at the father of my children ” See, I told you. I am not some crazy bitch who just wanted you home, there was a life-threatening issue!”
The doctor glared over in his direction now and said: ” Your wife is right, had she not responded in the way that she did, your son may not have made it.” To which he promptly stood up and stormed out of the room.
Fast forward to Daniel being one year old now, that is 6 months from the first reaction he had. We were sitting at my mother-in-law’s house and were eating breakfast with her, they decided that since he was a year old and trying to eat some solid foods that they would try and give him a whole egg to eat. He loved it, he gobbled down that scrambled egg like nobodies business. I was worried since the first reaction had come from Whey, which is a by-product of milk, that he might have a reaction to egg, though it is not dairy per se, children who have dairy allergies often have an egg one too. I stifled my objection since they really had not seen the kids in quite some time and allowed them to feed it to him. Well, I should have listened to my little voice that said no, within less than 4 minutes he was having another anaphylactic response. I rushed to the diaper bag and grabbed the Benadryl, a double dosage for his size, stripped him down and slathered his little body in hydrocortisone cream. My mother-in-law grabbed the diaper bag and my daughter and we jumped into the car, we headed straight for the ER. We signed in and waited.
They sent us back to a room and my son was again stable thanks to my efforts. The doctor came in and checked Daniel over from head to toe, and again we were told “they did not want to do an allergy panel on him because he was still too young” Looking back I think a lot of this had to do with that they were military doctors… Anyway… “Just avoid whey and now eggs, and you might want to stay away from ALL dairy by the looks of it for him.”
Wow. Stay away from all dairy. This was going to be hard. From that moment on we did just that, I read everything and anything I could from labels on packages, to recipes, to menus online. I questioned chefs and family, “What did you put in this, does it have dairy or egg?” This went on for a very long time, I think I possibly drove everyone around us crazy. It was not that they would intentionally give him an allergic reaction, but often they did not even register it when cooking.
Fast forward a bit more… At this point, my children’s father and I had split up and I was living back home in Georgia with my family. I began to cook a lot more, like 95% of all our meals were home cooked from scratch. I had decided that I was also going to get my children in to see my childhood doctor, we made an appointment with him and I took Daniel to see him. Daniel was about 3 years old now and I was about to put him into preschool at a local church, I wanted to make sure that we had all the documentation and an EpiPen if needed for the school to have on hand. We went to our appointment and the pediatrician examed Daniel. He then ordered the prick test which he said should have been done long before now, he could not understand why the other doctor’s who had seen him had not. We went in for the test and here is a list of things it turned out Daniel cannot have.
- Egg Yolk
- Clover honey
- Tree Nuts
- Dairy in General
The doctor was rather surprised but not overly surprised at the results of the test, I had told the doctor we had some small experiences with a lot on the list already and I treated them at the first sign of a reaction, which is hives. The peanut one was a weird experience since he had not actually ingested it, I had made his sister a sandwich which had peanut butter in it and not thinking about it I had touched Daniel with my hand. This after only a few short moments had left a hand-shaped rash on his arm. The doctor prescribed us an EpiPen and we went on our way. I enrolled Daniel into preschool as planned and even took a job at the school in the one & two-year-old room, where his brother was, to keep an eye on him but not to hover too much.
One day while I was teaching my class and getting ready to put them down for their naps, I had a teacher come rushing down the hallway yelling my name, I told my assistant to watch the classroom and bolted out the door. They had Daniel in the classroom waiting for me, he hopped out of his chair and tried to make his way over to me. The poor kid’s eye was swollen shut and red, hives forming all down his face and going down his neck. I ran over to the medicine box that I had sent in with him and grabbed the kit. I treated him and then looked at the teachers standing there in shock.
” Okay, what happened?” I asked now that I had my son medicated and in my arms.
“I don’t know, he was outside playing and then all the sudden he started swelling up.”
Another teacher looked at the one who just spoke up and said: “Does he have a tree nut allergy?”
Then the first teacher runs to get the list of allergies I had printed out for them and she says really loudly “YES!”
The second teacher looks at her and says ” You are an idiot aren’t you? He touched pecans outside on the playground!”
I was trying my hardest not to laugh at the whole thing, I was not overly mad, because this had been a long ride in just a series of allergic reactions up until now. The first teacher started crying as she made her way over to me and Daniel “I am so so so sorry!” She said as the tears streamed down her face.
“It is okay, but now you can see I am not an overprotective mother, I am a reactive mother. His allergies are real, he has medicine that needs to be given at the first sign of the allergy and if you wait too long then he has to be injected with the EpiPen. I suppose it was bound to happen sooner or later, but I am glad it did on a day I was working.”
I picked Daniel up and put him on my hip, we left the classroom and I went to see my boss, I asked for the rest of the day off, grabbed my other son and we went home.
We would have a series of small reactions from time to time, but nothing overly serious due to thoroughly educating our family and Daniel’s teachers, but that did not mean we were out of the woods yet with bad reactions the next bad one would come about 2 years later when Daniel was 5 years old. This reaction happened because I failed to read all the ingredients on the package of fried chicken… Yes, fried chicken. I had bought it before at this grocery store many times, but I did not realize they had changed the way they cooked it. So, since it was safe many times before this I did not think to read the label, and there was not an allergy warning sticker on the package.
We get home, I unpack the food from the grocery store and start putting together dinner. Daniel, who at the time, really loved fried chicken ate three pieces! That is a lot of chicken for a little guy, but he wanted it, so my live-in boyfriend [who is now my current husband] and I allowed him to eat it. It was not until about 3 minutes later we realized there was an issue of epic proportions…
Daniel got up and ran to the bathroom like FLASH the superhero, I have never seen him run so fast. He gets to the bathroom and then all the sudden he goes from superhero to looking like he was Linda Blair from the exorcist… Within minutes our back bathroom was covered in throw up. Our Daniel was cold, clammy and starting to have hives pop up on his body. I rushed to the kitchen and grabbed the kit, administered Benadryl first and something for nausea, after a few minutes the vomiting ceased and I took him to my bathroom to clean him up.
The whole time this was happening the only thing my little boy said to me was ” I am sorry momma, I didn’t get it in the toilet.” Poor kiddo, he was worried he had made a mess, and we were just worried about him.
My boyfriend cleaned up the entire bathroom without question and then came to check on Daniel. ” Is he okay?” he asked as he was wiping his arms off with antiseptic.
“Yeah, I think we caught it in time,” I responded as I gave Daniel a bath. ” That was the worst one I have seen, other than his very first reaction. What was in the chicken?!?”
He leaves us in the bathroom for a moment and comes back with the container the chicken was in and hands it to me. I look over the ingredients and see what had changed… clear as day it reads, to my horror, peanut oil.
“Oh my god! It has peanut oil in it! ” At this point, I feel utterly horrible this one was my fault, I had become relaxed enough in our routine, and thought that it was safe because I had purchased it before. From this moment on I decided that even if it was safe that it was best for us to routinely check to make sure that manufacturing companies did not change ingredients, that we should read everything and teach Daniel to read labels too.
Daniel was now in kindergarten, which scared us both, but to limit the chances of him having a reaction I made sure that I sent his lunches with him. And just like pre-k I sent in a list with his picture, to be hung up in his classroom and in the lunchroom. I also made sure that there was a kit inside the classroom and office of the school, just in case. Each one of his teacher throughout the year would call me and ask me when they had a birthday or special events, what my child could or could not have. This became our new normal all the way up into middle school, sometimes people would overreact to his allergies and tell him he could not have things like bread, one of the few times we allowed him to eat school lunches… But at this time we had learned that if it was less than 2% of the ingredients that it would not cause an allergic reaction, or if it was baked at high temps the allergies, like Whey and Egg Yolks, would be slim to none because the proteins which he was truly allergic to would die off at those high temps. All of that which is hard to explain to people who have no experience with such allergies, so instead of learning more about him as an individual they restricted him on what he was allowed to have. So as we had done before, he began to take his lunches to school to limit the frustration on his part and theirs.
Daniel had some other health issues that came about in 6th grade, he began to have severe headaches, fatigue, and pain in his side, this was all to the point that it was debilitating for him, we pulled him from school and began to homeschool him because of these issues. We went to every doctor imaginable in our area from the pediatrician to the ER, to the neurologists, everyone we could think of and no one knew what was going on with him. They finally landed on what I like to call a blanket illness/diagnosis Chronic Fatigue and Chronic headache syndrome… Code for we have no clue but we are slapping this on here because we have to tell insurance something.
Well, turns out it was an allergic reaction to something within our home that we lived in at the time, once we moved to another house, his headaches, pain, and fatigue have all but disappeared…
He is 13 now and fully aware of all of his allergies, even though sometimes family members may forget, he often reminds them “Hey, you know I can’t eat that.” with the sweetest smile. Daniel despite all his issues with food and his health is one of the kindest children I have ever had the pleasure of knowing. He has goals of going into aeronautical engineering one day and I hope to be in his corner every step of the way, cheering him on. Some allergies are more severe than others, we are just thankful he happens to be contact and ingestion based not airborne like some. We are still on our journey, however, and still, have small hiccups along the way, but things are better now and he is learning to cook! So I am sure you will see in some of my recipes where I mention him or some of our other stories about those adventures.
If this story about my son can help just one mom or just one child to know that they are not alone, that there are others out there too, then my job is done for the day. I will leave you all with a few resources below to help either yourself or someone you may know who suffers from food allergies.
Until next time
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