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.

A Little Scare

Well, I guess it was bound to happen someday. We had our first allergy-related trip to the E.R. But don't worry - everyone's fine!

Georgia had a very delayed reaction (think: 4-5 hours after ingestion), consisting primarily of vomiting, after eating about a slice and a half of sandwich bread containing tree nuts. She took Benadryl and was later given an anti-nausea pill at the hospital, but at no point did we have to inject the Epipen. Our allergist recommended over the phone that we go straight to the closest E.R., so we did.

This particular E.R. probably deals with more trauma injuries than pediatric allergy cases, so I'm not sure anyone there ever 100% believed that Georgia's symptoms were due to food allergy and not the flu, since she was not presenting the "classic" profile of allergic reaction symptoms including hives and airway restriction. (But I saw my little girl playing hard all afternoon, and I saw her waking up as happy as a clam again this morning, so I don't think she just spontaneously came down with the flu yesterday at 5 p.m. and then fully recovered by 11 p.m.)

Regardless, she is fine now, which we are all thankful for. That is what matters most. The silver lining here is that it was a great learning experience. So I thought I'd just focus on the positives and discuss some of the lessons we gleaned:

• Now we know to give Benadryl once an allergen has been accidentally consumed, even if there are no symptoms yet, because it might help prevent a reaction from starting. (I feel like an idiot for not realizing that we should've done that until well after the fact.)


• Now we'll have the allergist's phone number stored on our cell phones. We had no trouble looking it up online from where we were, but it dawned on us that that won't always be the case.


• Now I will feel less weird about going to the hospital if we ever have to do this again. I'll be less hesitant to seek medical help.


• This is a "data point" for Georgia. I know from talking to adult friends with food allergies that they have developed over the years an ability to know what's going on with their bodies. They probably wouldn't mistake a food allergy reaction for the flu, because they know the sensations of having an allergic reaction. So, for Georgia, this is just another data point to help her better understand her own body.


• We weren't on vacation, but the next time we are, I'll look up where the closest hospital is and how to get there. (I've heard that tip 1,000 times but never thought much about it. I guess I figured we either wouldn't need a hospital or would be calling 9-1-1, but last night I realized that there is a middle ground type of reaction, during which it's helpful to know how to get to the hospital.)


• The pendulum that swings from lax to vigilant in our house just swung back to vigilant. As much as we are all trying to avoid reactions, and accidents are kind of inevitable, there's nothing like a reaction to remind you that allergies are real.


• Having been through the E.R. experience now, I think next time we'll just head to the closest hospital and let the chips fall where they may, instead of thinking ahead to the rest of the evening, or what hospital we'd like to get to (banking on the fact that Georgia is probably fine), or that kind of thing.


• Joe would add that one lesson he learned was to pack a hospital "entertainment bag" for your one year old who will be up way past her bedtime. Yeah, that sounds nice, sweetie, but seriously, what are the chances we'll ever have such a thing at the ready when we really need it?


• Seems that cell phones don't work in most medical buildings. Next time I'll know to tell concerned family members not to worry if they don't hear an update for a couple hours. Also, I have rid myself of the delusional belief that an E.R. visit can be accomplished in thirty minutes or less. : )


• Last valuable lesson: if you walk into triage and promptly throw-up into their trash can, you will be admitted faster. (True, but I'm just kidding about that being a "lesson".)

So, given the probability that an E.R. trip was going to be on our agenda someday anyway (sorry, just being a realist), how great is it that we were able to figure out all of these things in the midst of this reaction instead of a more severe one?

Other positives/funny stories:

• June of course sprung a diaper leak while we were there, so Joe was covered in multiple bodily fluids. We did have a back-up diaper on hand, but no extra clothes, so June spent the rest of the evening charming the hospital staff mostly naked.


• During a fussy toddler moment, some guy followed by two cops walked by, and Joe urgently said to me, "Video! Something that takes video! A camera phone, I don't know - something, anything!" I immediately started scrambling through our bags looking for a recording device, not understanding what he so urgently needed to record, thinking that it related to the guy or the cops. Turns out he was just hoping we had some sort of on-screen entertainment available for June. Ohhhhhhhhhhhhh.....now I get it.


• I let the girls play with surgical gloves, but Georgia quickly and furtively shoved them back at me the moment the physician opened the curtain, because she thought she'd be in trouble for using them. (Maybe you had to be there, but it was really hysterical.)


• We let June eat half of the Pedialyte popsicle that Georgia was given. (Georgia had to keep it down before they'd let us leave.) What can I say? By that point, we were convinced Georgia was fine, desperate to leave faster, and out of ways to keep June pacified.


• We love our allergist! She responded quickly to the after-hours call, gave us clear advice, called ahead to the hospital to let them know that we were on our way in (not that that made any difference, but still, a nice touch!), and then called me this morning to see how Georgia was doing. Love her.

Yeah, I took some pictures. Why not? What else you gonna do when stuck in cramped quarters with your family doing a whole lot of hurry up and wait?

Just a little follow up

Since my last post was kind of a rant, I felt like I should update this blog to reflect that I think we've got everything worked out with Georgia's preschool now. I had a phone conversation with the teacher in which she probably concluded that I'm a little paranoid (her quote: "Um, we ate tomatoes?"), but also managed to convince me that she "gets" it as far as the need to check all foods, the concern for cross contamination, and so on and so forth. We left it that Georgia will continue to bring her own lunch, but will be allowed to eat some of the school's food so long as on any given day the teachers tell her it's safe.

Surprises:
1) I'm surprised that this is where we've ended up, that is, that I even feel comfortable letting Georgia eat ANY of the school's food, given that my generally held belief is that the risk isn't worth the reward, and that classrooms should be a food-free safe haven.
2) I'm surprised that the school/teachers even want the onus to be on them as far as telling Georgia "yes, you can eat it" or "no, you can't." It seems most schools are so afraid of potential liability that they wouldn't touch this issue with a ten foot pole and would prefer to have the parent make the call in every case.

What's playing into this:
1) It's a Montessori preschool, so the serving of food is not just about nourishment, but also about having the children work on a practical skill and share a communal experience. (Or something like that.)
2) I'd be more willing to say "screw the skill/communal experience" except for the fact that Georgia's been so hesitant to get involved in ANY group activities with other children, but her teacher reports that Georgia really likes the meal-prep part of the day, so I am loathe to take that little shred of participation away from her. For the sake of her social development, as parents we're kind of trying to latch on to something she likes and go with it here.
3) The foods in question are very basic, like last week they peeled oranges or bananas, and the week before that I think they made a salad of lettuce and tomatoes. I'd feel more comfortable if someone could give me an actual menu ahead of time, but I guess the teacher has persuaded me to relax and trust her that the foods she's talking about incorporating aren't going to be a problem. The fact that so far they have not been processed foods makes it less worrisome to me from an allergy perspective; I hope it stays that way.