What if I told you that there were foods that could actually kill your baby just by them touching it, not even consuming it? That sounds dramatic, unrealistic, and absurd, right?! Unfortunately, this is our reality, along with 32 million other Americans. When we found out that our youngest had not one, not two, but five food allergies that would result in anaphylaxis along with 4 others that weren’t as severe, I was at a total loss and terrified. How was I going to keep my baby alive??
I first had suspicions of a food allergy with one of my youngest after giving him yogurt; anywhere the yogurt had touched his skin had broken out in small hives. I immediately called the pediatrician’s office who told me to give him Benadryl, and to keep observing him. While we were waiting for the medicine to start doing its job, we put him in the bathtub to make sure all the yogurt was off of his skin.
First Allergist Appointment
Soon after his reaction to the yogurt, at an already scheduled appointment, the pediatrician referred us to a popular allergist in our area so that we could confirm a possible dairy allergy. At our first appointment, which was just a consultation, the doctor told us that we should start introducing peanut because of how severe and common these allergies are. So, one day when my husband was also home with us we gave him peanut butter on a tiny piece of pancake, and his eyes immediately started to swell up. Not like in the movie Hitch with Will Smith, when he eats the shellfish swell up, but more multiple hives all over his eyelids and under his eyes type of swell up. I started panicking and called the allergist, who got on the phone right away and said I needed to get him to the hospital ASAP. He said give him some Benadryl on the way, and it may work but if it doesn’t he needs to be somewhere that can help him. This was especially terrifying as we had not done testing yet to confirm any allergies which meant we also didn’t have an EPI yet. Steroids, antihistamines, and four hours in the Emergency Room for observation later, it was confirmed that he had a life threatening allergy to peanuts.
The next day, was our first official allergy testing appointment. At this appointment we learned that our allergist did not believe in testing for multiple allergens, unless there was a good cause for it, as food allergy testing can be somewhat unreliable. Because of this Jamison was only tested for peanut, milk, egg, and walnut. He tested positive on the skin prick test as being highly allergic to milk, egg, and peanut, but negative to the walnut. At this appointment he also had blood drawn which confirmed the egg and peanut allergies, but showed that the milk allergy was very low (which was contradictory to the skin test and the whole reason we were at his office in the first place).
Since the blood test results came back showing such a low allergy to dairy, the allergist told us to proceed in switching to cows milk once Jamison was one and old enough to drink it(in two months). At that time, we started slowly introducing milk, which was free of peanuts or possible contamination with peanuts, which actually was not that easy of a task. Obviously, milk is made without peanuts right?! Well yes, but you would be shocked to find out how much cross contamination there are with peanuts across all types of products in factories, which includes dairy products such as milk.
Second Trip to ER for Anaphylaxis
The first couple of days transitioning to cows milk went okay, but he was being given very small amounts. Then, one morning we woke up and gave him milk first thing, which was out of the norm because typically we would feed breakfast and THEN give milk. Shortly after he drank his milk, I noticed that he was slightly swollen around the collar of his pajamas. I quickly unzipped his PJs and saw that his little body had turned into one GIANT hive, but his face was completely normal. I knew, the time I had been dreading but knew would come at some point, had arrived. It was time that I literally held down my tiny little one year old and stabbed him with his epinephrine just days after his first birthday. While I took him in my arms, with his epinephrine in my hand, I quickly ran through everything I had been learning about allergies in the prior two months. I quickly opened his Auvi-Q (epinephrine) and stabbed him in the thigh. This little boy of ours is the strongest, most resilient, happiest child you will ever meet. He cried very briefly, while we rushed him to the car, to get him to the hospital.
Both the pediatrician and our allergist had advised us that with how close we live to the hospital, if my husband and I were both home, we should immediately get him in the car and take him ourselves, as this would be the fastest route of transportation if we were home. The reason we should only do this if we were both home, was so that one could drive and the other could sit in the back with Jamison and his spare Auvi-Q, should he need a second dose of epinephrine.
Why is it that when you’re a parent these things seem so much harder on us? I know it isn’t, but I was trying to fight back all the tears and emotions so that he wouldn’t be scared, while he was smiling and laughing. When we got to the hospital my husband, Martin, dropped us off right up front, I ran Jamison into the Emergency Room, and proceeded to cut everyone else in line, who weren’t in an obvious emergent situation, and told the front desk person that my son was in anaphylactic shock and that he had just been EPI’d and needed to be seen immediately. I wasn’t sure how this was going to be perceived, but everyone that I had skipped over was very kind. Also, good luck stopping a momma whose baby is the middle of a medical emergency! The front desk took one look at him and they immediately rushed us to the back where a doctor could take a closer look at him. This reaction was different from the peanut reaction, which I quickly learned that every allergic reaction can be different in both symptoms and severity.
Here we were again, back in the emergency room with steroids, antihistamines, and four hours for observation. This time was a little different though. Not because of the treatment or allergy, but because this time I was flooded with the dreaded mom guilt and worry. Did he get this from me? Did I not do enough research to keep him safe? Why didn’t I listen to my mommy intuition and decide not to give him dairy? I mean, that was the whole reason we went to the allergist in the first place. Lastly, how was I going to keep my baby boy not only safe but ALIVE without putting him in a bubble?
When we left the ER we were told to follow-up with the pediatrician and allergist. Our allergist was out of town that week, but spoke to us over the phone. He looked at Jamison’s numbers for dairy again, and told us that it must have been something else that we didn’t know causing the reaction because he just didn’t believe that it could have been the milk. At the appointment with our pediatrician, I expressed how much I liked the allergist, as he did seem very educated and well versed in his field; however, I just did not agree with him on this. I didn’t understand how it could be coincidence that when Jamison ate yogurt months prior he got hives, and then now when he drank milk and ONLY milk he went into full blown anaphylaxis. (By the way – our pediatrician is the BEST). She told me that while he is an extremely good allergist, we should be with someone who we feel comfortable with. So she referred us to a new allergist.
Time To Find a Second Opinion
I guess I should also mention, that in addition to our experience regarding milk, we had also been told by the first allergist that we needed to be prepared, because Jamison’s allergies were so severe and to foods that were so important to childhood development, that he was not going to be a well child. If you’re a parent, can you imagine hearing those words? Now, I didn’t only have the new found fear of food allergies, but now I had the added stress from thinking that my child was not going to live a healthy life because of it.
This comment did not sit well with me, not because I just didn’t want to accept what he had to say, but because I knew there were plenty of allergy kids who lived happy healthy lives. Why was my son different? Also, if that was the case, then so be it, but I couldn’t come to terms with that without getting a second opinion and knowing that I had exhausted all options.
Jamison’s new allergist had the same thinking as the first regarding allergy testing, in that we shouldn’t go crazy doing a ton of different tests, but did think we should do the top 14 food allergens. This is when we found the other foods that he was allergic to. Yet again, his dairy bloodwork came back with a low allergy, but this time we were told that while it was low on the scale that they use, his reaction tells us more about his specific allergy than the test itself does. I cannot even begin to tell you what a relief this was to hear. Before this I was living in fear everyday because, if milk didn’t cause his anaphylaxis then what did? The confirmation that it most likely WAS milk was such a relief!!
Progress
It’s been a little over a year since Jamison’s last allergic reaction, and we’ve already come such a long way thanks to our own research and our amazing allergist. He can now tolerate four of his nine food allergens. Not only that, but he is most DEFINITELY a well child. He has always been the smaller twin, but just recently he surpassed his brother in not only weight, but height too!
Through all of this I have learned how to be a research MACHINE. I was already pretty good at it, but I now have it down to a science. I’ve also learned how important advocating for our health can be. In this case it was for my son, but through this experience I’ve learned that it is so important for everyone to do. I think it is so important to research your physicians as well as your diagnosis. Do I mean go out and let webMD be your doctor? Definitely not! I will shed more light on what I mean about advocating for your own health in another post, but for now just take away that if you don’t agree with something speak up!
My biggest takeaway from this whole experience though, hasn’t come from the allergies or doctors themselves. It has been a lesson that my then one year old taught me. Through all of this, he has never stopped smiling. He has been the strongest little angel I’ve ever met. This has taught me that I need to stop when things get really bad and realize how much worse they could be. If this little boy of mine can smile through everything he has been through, then who am I to live my life any differently?
Conclusion
If you’re a food allergy mom or dad reading this, please know that you’re not alone. It’s rough and it can be so isolating at times. If you’re not a food allergy parent, I sincerely hope this has helped you understand why we can come across as overbearing or difficult at times. I promise you, it is not because we want to be that way, but because we NEED to be that way to keep our children safe. So the next time you think about sending a peanut butter and jelly sandwich to school because it’s easy, even though you know there’s a child with a peanut allergy in the class, please don’t. (Yes, people do this.) Please, understand that it’s not about wanting to be an inconvenience, but about wanting the chance to watch our babies grow up and make it to adulthood just like you do.
