what happens next? information for an initial food allergy diagnosis

symptoms of an allergic reaction

what happens next? information for an initial food allergy diagnosis

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An initial food allergy diagnosis or reaction is incredibly overwhelming. In many ways, we knew it was coming with Ollie but I still remember leaving the allergist feeling deflated and terrified. I was sad and angry. How on earth were we going to keep him safe? What had he done to deserve this? I went through it all. When I was finally able to get myself off from the emotional rollercoaster, I got to work. I’m a list-maker. I made list after list of anything and everything food allergy: websites to check out, things to do, things not to do, things to have, food to buy. This is by no means an exhaustive list, but here is ONE organized, simplified list of things to do when first faced with a food allergy diagnosis.

1. get epinephrine

epinephrine is vital for any food allergy diagnosis

Epinephrine is the life-saving drug that can stop anaphylaxis. There are now many auto-injector options: EpiPens, AuviQs, and a number of generics. If you’re reading this because you’ve experienced an allergic reaction but have not yet seen a board-certified allergist (they can take a long time to get into) and therefore don’t have epinephrine in some form, make an appointment with your pediatrician ASAP. Better yet, call the on-call doctor and ask if they can prescribe something over the phone. Then get off the phone, drive to the pharmacy, and never let the two-pack leave your side. ALWAYS carry two… ALWAYS, ALWAYS, ALWAYS. Should I say it again? There is risk of a second, biphasic reaction. There is risk the first dose simply won’t work. I hate saying that but it is true. Epinephrine is temperature sensitive; perhaps yours got too hot or too cold one time. There is also risk of the auto-injector malfunctioning. It’s impossible to know. Just trust me (and countless far more reputable sources), when I say always carry two.

We actually always have two EpiPen Juniors AND two Auvi-Qs with us. Our allergist at Boston Children’s Hospital added the Auvi-Qs as they were completely free thanks to their affordability program. An Auvi-Q is a square, flat auto-injector as compared to a long, round EpiPen. I’ve heard a lot of teens prefer Auvi-Q as it fits easily in a pocket. It’s more inconspicuous. I like that an Auvi-Q literally talks you through the process. Remove the cover and the instructions start, “If you are ready to inject…” The audio instructions mean just about anyone should be able to use an Auvi-Q in the case of an emergency. All of our epinephrine is kept in two different thermal pouches for temperature protection.  

Hot tip: While you’re still at the pharmacy (or as soon as your Auvi-Qs arrive in the mail), check the expiration date and put a reminder in your calendar to re-order two weeks from the expiration date.

2. emergency plan

An emergency plan details what your child is allergic to and what to do in case of a reaction. Some give specifics about ingestion versus contact. You’ll surely get a plan after seeing a board-certified allergist. As it can take a long time to get into an allergist, consider using this one from FARE. I actually keep this in our med bag with the plan from our allergist. FARE’s Emergency Plan goes into a lot of detail about what constitutes an allergic reaction, specifically anaphylaxis. Anaphylaxis isn’t as cut and dry as the EpiPen commercials make it out to be. I’ll be writing about that soon. We had an instance where we should have used an EpiPen and didn’t. All ended well but Ollie had a two-system reaction and therefore should have received epinephrine.

3. read labels

checking ingredients on labels is important after a food allergy diagnosis

In terms of labels, we follow the rule of three. I can’t remember where I first read it to give proper credit, but I’ll at least tell you it wasn’t my idea. With any packaged good, we check ingredients when we buy it, when we put it away, and before it’s consumed. This means, at minimum, a food is checked three times before it reaches Ollie. Manufacturing and labeling laws in the US are honestly crap. Only the top eight allergens have to be highlighted in a “contains” statement and there is no requirement for shared facility or “may contain” statements. The only way to be sure is to contact manufacturers. This will depend on your family’s needs. We’ve worked with our allergist to determine when to avoid shared facilities.

With labels, find a source to help with all the ways an ingredient hides. Our allergist gave us a sheet for each of Ollie’s allergens. Did you know there are over 20 ingredients to look for when trying to determine whether or not something contains milk? Even though milk is supposed to be highlighted in a “contains” statement, I’ve seen it missed countless times. If you haven’t yet been to an allergist or you’re looking for something more convenient, I also like FARE’s How to Read a Label” cards. Some days, I don’t remember to take my slippers off before heading out the door; I certainly appreciate a resource that helps me remember any of the 100+ names we have to watch for between all of Ollie’s allergens.  

4. question list

As with any medical diagnosis, you’re going to have a lot of questions. If you are one that uses a journal or planner, dedicate a page of it as your question list. If you use an iPhone, create a note that is your question list and share it with others as you see fit. My husband and I have a shared note for our medical questions. That way, when I realize at 2 AM that I want to ask about expeller pressed refined sunflower oil versus just refined sunflower oil, I can quickly add the question to our list and try to actually shut my brain off for a second. That second part is rarely successful.

5. don’t overwhelm yourself

If you want to slap me after reading that statement, it’s OK, I understand. I sometimes want to slap people when they tell me things like that too. Let me explain myself. When Ollie was first diagnosed, I spent a night on Facebook joining every food allergy group I could find. I then subscribed to the newsletters of every resource I could find. The next day, my newsfeed was nothing but food allergies and my inbox was being taken over. I couldn’t decompress by creeping on pictures of cute babies that belong to people I kind of know. Instead, I was inundated with countless posts about reactions, cross-contamination, and treatment options. I had gone in too deep. I left almost everything and focused my attention on one group and one resource. If you can’t tell by the links above, FARE is my favorite resource. Over time, I have slowly re-joined groups and added more resources to my list. Don’t feel you have to know it all right away. Start with the basic information you need to stay sane and safe.

As I said earlier, this is by no means an exhaustive list. It hasn’t touched on school or daycare, dining out, cooking, handling allergies with multiple children, and so much more. This is meant to be a high-level overview to get you started. If you’re anything like me, I hope it’s helpful in slowing your brain down for even 30 seconds. If it wasn’t, let me know the million other things you’ve been mentally adding. I bet we’ll agree!


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