…that you’ve made the right decision in an emergency situation? How do we ever know whether our children’s food allergic reactions will develop into something that is life-threatening and tragic? It’s certainly a risk we face EVERY SINGLE TIME our kids or someone we love experiences an allergic reaction to something they ate, touched or breathed in. In the nine years I’ve been dealing with my son John’s food allergies, I am always humbled by how quickly life or death decisions must be made, and what factors must be considered when making them.
The past few weeks have been very unsettling in our house because John has had more reactions lately than I care to count. We’ve had more than one “sensitive” discussion about how his allergies are upsetting to him, and overall it’s just been a rocky road. Everything was cool and stable for so long, and now it feels as if the universe is shouting out to me to pay close attention, and that vigilance is a must in every single situation when it comes to our food allergic kids.
Yesterday morning John broke out in hives after breakfast. As I rushed to give him Benadryl, I drilled John about what he ate, and if he ate anything different. For the record we are pretty much allergy free in our house, so it confused me as to what would have caused the hives all over his face. John admitted he gave his brother a Gerber Banana Cookie, which is seemingly safe, but a closer look at the label (which oddly doesn’t follow the Food Allergy Labeling and Packaging Act by not listing CONTAINS: allergen, etc.) showed it contained buttermilk powder. The cookie was baked withe buttermilk powder, not coated in it. John simply grabbed three out of the box, and gave it to his brother because he had asked for a snack while I was upstairs. When John came upstairs and told me he was itchy, I panicked when I saw his face…two doses of Benadryl quickly resolved the hives, and I felt assured no further intervention was needed.
Then last night before my son when to bed, he had about four hives on his face and said his face was itchy. Again I gave him Benadryl because he had no other symptoms (such as wheezing, coughing, etc). There was nothing John ate that he didn’t have before. Fast forward to this morning, and once again, after breakfast John came to my room itching his arms and face and his face looked like this:
I immediately gave him the same two doses of Benadryl that worked on his reaction yesterday, and called his doctor’s emergency number, all the while watching John like a hawk. He stayed right next to me the whole time, as I held his epipen in one hand, phone in the other. I looked closely for every other sign possible and asked John a million questions such as Did his throat hurt? (No) Do your lips or tongue feel funny? (No) Does your chest hurt? (No) Do you feel dizzy? (No) Does your stomach hurt? (No) John’s hives were mainly on his face, parts of his back, his arms and one part on his leg…what many consider a full body hive reaction. Many people feel that these symptoms alone is enough to give the epipen but I hesitated to give the epi for one reason: my doctor on the phone said that they recommend giving the epi when the patient presents the vomiting/breathing/mouth symptoms, and that as long as he wasn’t in distress and the hives were lessening, that the Benadryl would counter the reaction. Of course, John’s symptoms could worsen at any minute, in which case I would have given the epi and called 911, no exceptions. But with a house full of young kids, no husband around and his highly respected allergists telling me the Benadryl was an “appropriate” course of action at that very moment, I decided, yes, the Benadryl was good enough for now, and as I saw his hives literally fade away, I was comforted.
However, in a lengthy discussion with the allergists’ office, I wanted more answers about what was going on with John, and can I expect to see another reaction soon, perhaps an even worse one? Apparently these types of reactions can occur intermittently for up to a week after the initial one, and there is truly no way to know if the reaction will present itself as hives or something like anaphylaxis. John’s course of action was to take a Zyrtec and Benadryl once a day until this passes out of his system, then I’ll need to bring John back in to determine if the reaction was caused by either touching the baked milk cookie, or possibly an emerging soy allergy. We’ll do a full testing on John again to rule out soy. If not, then we can assume the reaction was caused by touching that cookie. It’s another argument for the logic behind food free classrooms (or only allowing fruits and veggies as snack choices). Because if anyone believes that you can’t suffer major reactions by just touching a food you’re allergic to, simply take another look at the photo above.
Finally, I asked the doctor if I made the right choice, because I was still doubting that I did. I was assured, yes, given the set of circumstances, and John’s list of symptoms, that I made the best choice at the time. I then asked “But why? Why did this happen? Why now? How did it happen, and how do I know it won’t happen again and be THE big reaction that puts John’s life at risk?” I was told “You don’t know. None of us know. We don’t know if your son’s reaction was stemming from yesterday’s or if he has a new allergy, and if he DOES have a new allergy, why now? No one knows”.
No one knows. Ever. As a mother I always want to make the best decisions and am fiercely protective of my children, as are all of you. But what never ceases to amaze me in the world of food allergies…is how LITTLE we still know. How mysterious this disease is, how different each reaction is, and why some are highly allergic to one thing, and some outgrow others. I’m always asking why, but still feel like I don’t have any more answers than nine years ago when we first started on this journey. At which point are we going to know more? At which point can food allergies be eradicated? I know we are headed down the right road with new therapies, treatments, laws, etc. But on days like today, I’m painfully aware of how little we DO know. And how so much of this is still out of our control.
During this holiday season, I wish you all Happy Holidays and to BE SAFE. xoxo