Friday, April 15, 2011

Clear as mud

As much as I tried to put the most positive spin on our E.R. trip in the last post, Joe and I realized after having a few days to let it soak in that the experience left us with a lot of unanswered questions. I've since had another conversation with the allergist to clear up some of our confusion, so I thought I'd share the additional insight. (And here's where I again have to remind you that you shouldn't take any of this as more than a fun anecdote. You really can't apply our doctor's medical advice to your own situation, because it might not be apples to apples.) Okay, lawyerly disclaimer over.

And now for a side story. Part of our confusion came from the fact that, completely unrelated to food allergies or this weekend's incident, about 48 hours after our E.R. trip, Georgia ended up seeing a pediatrician regarding an ear infection that she had last month. When the E.R. trip came up in conversation, this pediatrician seemed shocked that the hospital had not followed "protocol" for response to an allergic reaction, and had not directed us to continue giving Benadryl after we went home. During the course of this conversation she exclaimed, "That was a life threatening situation!" Though I was not present at the appointment, Joe assures me he gave the doc a strong stink-eye implying, "Hey, lady, could we please not discuss all things 'life threatening' in front of my impressionable young daughter!" Still, though, it got us to re-evaluating Georgia's reaction.

So, what really happened Sunday night? Was it anaphylaxis? Should we have given the Epipen? Should the hospital have done anything differently? Should we have continued giving Benadryl? When are we out of the woods with respect to any reaction? These are the types of questions we had swirling in our heads.

Here are some (paraphrased) answers:

1) The allergist made us feel better by assuring us that we were understandably confused in the heat of the moment (and afterwards), because this was not a "typical" reaction.

2) She was not surprised by how the hospital treated us and thinks we likely would've gotten the same treatment at most area hospitals. As she put it, in her experience, if you do not have hives, they simply have a hard time believing that you are having an allergic reaction. (Never mind the fact that all literature on the subject indicates that hives need not be present; I think it's just a case of lack of familiarity and E.R. docs having to rely on knowledge of the most typical cases, not to mention juggling all manner of various maladies on any given night.)

3) After Georgia initially recovered from the reaction, we should have continued giving her Benadryl every 4-6 hours for the next 24 hours to make sure that everything stayed under control and that a biphasic reaction did not occur. So, we blew that one! (As did the hospital.) Joe did, however, end up sleeping in the same bed with Georgia that night, just to put our minds at ease, so I don't feel too bad about our flub.

4) Had we spoken to the allergist about 20 minutes earlier, while Georgia was still vomiting in rapid succession, the allergist likely would've advised that we inject the Epipen. She said that is what she usually recommends when internal symptoms (like vomiting, or swelling of the tongue) are occurring. She prefers to err on the side of caution and says it would never be "wrong" to use the Epipen, because it will not hurt Georgia. In this particular case, she said it would have stopped the vomiting and made her feel better. However, by the time we spoke to the allergist in the midst of dealing with this reaction, Georgia had at least temporarily stopped vomiting and had fallen asleep in the car, plus we were not far from a hospital, which is why the allergist did not advise us to inject the Epipen.

It's all so weird, isn't it? I mean, once you have the benefit of hindsight and knowing that everything turned out JUST FINE, it sounds ridiculous to have considered injecting the Epipen, because that's just a much more dramatic thing to do. For starters, it would mean immediately calling 9-1-1, arriving in an ambulance, and likely staying overnight in the hospital. Not to mention the fact that it would probably totally freak Georgia out (which I'm all for if it means saving her life, but generally against if it's not necessary).

But the problem is, you don't know until afterwards that, yeah, things will turn out just fine without the Epipen, and if you need it and wait, it can be too late! Which is why the allergist says when in doubt, use it.

I just feel funny knowing that there have now been two reactions where maybe we should've used the Epipen but didn't. (And then at the same time, with the benefit of hindsight and knowing that she recovered fully without the Epipen, there's a part of me that's glad we didn't inject the Epipen. Is that bad?) I am certainly not trying to take chances with her health in these situations, I'm just saying we've gotten very lucky in the past, but this is all a good reminder that one cannot count on "luck" during future allergic reactions. In short, better safe than sorry.

5) Does it even matter if it was anaphylaxis? What is the point of labeling the type of reaction? I don't know. To us it was just a point of curiosity, wanting to understand Georgia's allergies better, wanting to know if we should've used the Epipen, and wanting to know how "serious" her reaction was. (Also, we were confused by the list of "types of reactions" on FAAN's website, trying to fit Georgia's experience into one of their categories.) The response from the allergist was that, again, this was a confusing, atypical reaction, and we may have hit on a gray area where even she can't fully describe the reaction. It was not "just hives" because it included internal symptoms and no hives. She said certainly it had "anaphylactic potential" if it was not actual anaphylaxis. If her blood pressure had dropped, then it would be deemed anaphylaxis without question. But Georgia's blood pressure measured just fine by the time we were at the hospital. Could a BP drop be what caused her to so easily fall asleep on the couch or to pass out asleep in the car on the way to the hospital? I hope not but guess we'll never know. So if I understand it right, hives alone would not be anaphylactic, hives + vomiting would be anaphylactic, vomiting + blood pressure drop (or just about any symptom + blood pressure drop) would be anaphylacitc, but vomiting without the blood pressure drop = not anaphylactcic probabaly, but "anaphylactic potential." (Whew! What a mess! And maybe it doesn't even matter from a practical standpoint, but I thought I'd share, for what it's worth.)

So, there you go. We've learned a lot, but I'm also amazed at how unclear all this allergy stuff is to me. I mean, I don't consider myself to be on the uneducated end of the spectrum. I write a blog about food allergies (albeit mostly about personal experiences, not research) and read about them frequently. And yet navigating food choices everyday, and handling a reaction when it happens still feels much more like an art than a science to me. It's all just a collection of individual choices guided by medical advice, but not clearly black and white.

1 comment:

Sam said...

I think your entry title sums it up! This is all so confusing. My daughter had another reaction (hives) to some unknown something on Sunday too (must have been an allergy kind of day) and now we're confused all over again as well. Luckily we're getting tested this weekend to hopefully confirm what she is actually allergic to. What a mess. Thanks for writing this because it makes me feel like I'm not the only one who doesn't get it!