This is tricky stuff, emotionally, mentally, physically. Some of you may remember our incident in FL. DS had appeared to be having a reaction after eating at a restaurant on vacation, although it would have to have been cross contamination because he ate basic foods. I gave the epi, he got temporary relief, but then symptoms came back. I called 911, gave second epi, and waited for the ambulance. All ended well.

For a while, we thought he was allergic to potatoes based on recurring symptoms. He was experiencing lots of reflux for some time after incident in FL. We went to the GI doc, the allergist, they suspected it might have been an EE attack, not a reaction. He hasn't been diagnosed with EE. Finally I went to the pediatrician. He had a stomach xray done, and he was severely constipated, triggering some of the symptoms he was experiencing which I wouldn't consider typical allergic reaction symptoms. He now eats potatoes fine.

When this story popped up about Oakley, it very much reminded me of FL, and had me thinking again it was a reaction, but truthfully, we will never know. For the record, the allergist, Pediatrician, and GI doc all agreed I needed to epi because symptoms matched an allergic reaction, they came on suddenly, and waiting could be deadly as this story shows. His symptoms were: stomach pain, throat discomfort, coughing, chest pain, and wanting to throw up because something was stuck but couldn't. His voice also began to change.

Anyway, I very briefly discussed this with DS, reminding him to epi...and I thought conversation went well. Fast forward two days, and I've triggered anxiety about allergies again that he felt after the incident in FL.

It's such a fine line with kids...about being prepared, understanding the risks, reinforcing using the epi, and triggering anxiety that affects their day to day living.

BensMom, I am not nearly as good at the science stuff with CM, but I think that this is where you really need a good allergist who can help you make that distinction for your case.  There are SO many factors.  I have a different plan for at home than for when I'm at camp as well.  Plus, multiple allergens make things more complex too.

My plan from my doctor includes that if for some reason I was to have a known ingestion of apple, cherry, or saffron while I was at camp, we would epi regardless - even if I didn't have any symptoms.  Once we called EMS, the camp nurse would draw epi from a vial in case I needed another dose before they got there so that I would have all of my other pens (I usually take eight to camp) with me in the ambulance because EMS can be iffy where we are.  But this is taking into account that I have really severe asthma and reactive airways, plus I'm on beta blockers, in the middle of nowhere, and generally pretty medically fragile.

On the other hand, if I got a bump on my lip at home and was pretty certain it was egg cross contamination, or maybe banana during ragweed season, I'd just benadryl it up and wait it out.

It's really, really not a simple calculation, honestly-- not in the real world.  Because as you say, there is the expense, embarrassment, trouble of going to the ER for what turns out to be minor or self-resolving, but if you don't, then you're really rolling the dice. 

For us in the US, cost is a huge part of that decision-making.  It just is.  If you're going to be out $500+ for a trip to the ER, then you're probably going to opt a lot more than is wise for "wait and see" and benadryl. 

MOST symptoms, even in anaphylaxis, self-resolve.  There are contact reactions, and then there are systemic ones.  Anaphylaxis isn't really a special category-- it's just a subjective term to describe (usually) a more serious kind of systemic reaction which involves multiple body systems. 

[spoiler]Once that cascade STARTS, though-- it's like a roulette wheel in motion, basically.  Benadryl WILL help, with most grade 1-3 symptoms, anyway.  It's just that if the cascade has already landed on "massive cardiovascular involvement-- with some hives" then you can HIDE the hives temporarily with that benadryl-- which won't do a thing to stop the second messenger cascade going on in the cardiovascular receptors already.    Then again, epinephrine is ALSO in the category of mostly 'masking symptoms' but it will handle symptoms which can kill you in a few seconds-- like your blood pressure being so low that your heart stops. 

It'd be a lot easier if symptoms only meant one thing ever, and could only happen from one cause, ever, and if there were a single feedback loop in the system.  But there isn't. 

It's not even clear that we know (yet) precisely WHAT all of the intermediaries/modulators are for food anaphylaxis, and whether or not they are the same as for any other cause of anaphylaxis. 

SO blocking those molecular targets (histamine, leukotrienes, etc... .and ??)  isn't really possible at this point in time-- which epi doesn't do, either.  Exogenous epinephrine aims to make it survivable, that's all. 

It isn't even completely clear that it does that.  Seriously-- I know that this goes against everything that we tell people, against everything that every responsible physician has ever said about food anaphylaxis, etc... but... I'm not sure that field administration of epinephrine really DOES much to alter the course of anaphylaxis.  I'm truly not sure.  Maybe it helps with airway symptoms, sure... and MAYBE it helps (some) with blood pressure. 

It has long bothered me, in fact, that there ARE cases which hit the news in which a patient experiences massive anaphylaxis with seemingly excellent, timely intervention-- often with ample and prompt epinephrine-- and dies anyway, sometimes within minutes.  It's not clear (to me) that those kinds of reactions are survivable with anything short of them happening when the person basically already has a central line and intubation in place.

This is the thing that has haunted me about that reaction that DD had as a toddler-- sure, we SHOULD have epi'ed, but-- honestly, by the time we realized that, it was already so far down that road that I'm not convinced that it would have done much good.  That's the thing-- when DD has anaphylaxed, it has usually been with breathtaking SPEED-- without much warning.  It's non-specific and then it's instantly TERRIFYINGLY severe.  The serum concentrations of epinephrine from an IM autoinjector dose take a few minutes to peak-- and that is, quite bluntly, time that she simply doesn't have in our experience.  Really.     This is why we've always been SO freakishly careful about prevention of exposures.  I worry that DD doesn't fully understand this, in fact. 

And anyway, it's never been PROVEN that epinephrine administration does anything to STOP anaphylaxis in its tracks or anything-- and in fact, there isn't any way to (ethically) get approval to study it, even-- but-- it's THEORETICALLY going to be helpful in a supportive (cardiovascular, airways) to some percentage of people, and the rest.... it won't make things worse, at least.  [/spoiler]

   This is a very scary and unpopular sentiment for parents-- understandably.  I don't much like contemplating it for myself, either, come to that. 

Ok, I'm going to have to do some research and rethink all this. I'm embarrassed to say this after him having this allergy for 17 years. I've read here many times that benadryl can mask a more serious reaction. I've read "epi first." But epi reverses symptoms of anaphylaxis--opening airways, raising blood pressure. If you don't have those symptoms, will it prevent them from coming on? Or, as you're kind of saying, is it just buying you 20 minutes so you can get to the ER in case it comes on after the epi wears off. And if you just have a bump on your lip, doesn't benadryl actually reverse that? And how does benadryl mask your throat closing? Ugh. I feel really kind of idiotic right now. I consider myself to be pretty well-educated on this stuff, but I guess not. I thought benadryl would be ok for, you know, just a fat lip with nothing else happening. I just worry that if I tell him he has to epi and has to go to the ER, he'll be reluctant to epi because he doesn't want to deal with going to the ER.

Understand, though-- the REASON to go to the ER is why you can't skip that step. 


If Epi doesn't help-- and in biphasic reactions in particular, that second phase often doesn't respond well-- which means that this is potentially after recieving epinephrine already and seemingly having had the reaction resolve well in the interim...


anyway-- if Epi DOES NOT reverse symptoms, then you're in VERY VERY VERY deep trouble, and you have exactly no tools of your own to deal with that trouble.  The ONLY way to save someone anaphylaxing like that without a huge risk of anoxia and massive brain damage is with a volume resuscitation that begins within seconds (at most, a minute or two) of that cardiovascular/respiratory collapse, and likely includes direct application of high dose beta agonists (dopamine, etc) in addition, AND likely involves cardiac stimulation, possibly intubation/mechanical ventilation. 

This is the thing that you see with stories like this-- even when it is possible, via very fast first-responder times in a highly urbanized setting, to start a volume resuscitation within a window of something like 8-10 minutes-- it's iffy as to whether or not that is fast enough for the person to actually recover fully.  A fair number of those people still go on to die after days or weeks on life support. 



We have historically managed the way that we do by knowing that when DD is in our home-- she is ALWAYS within 2-4 minutes of an IV line, and within 5-7 of a central line.  We've only made that dash ONCE-- but managing would be quite different if we even lived another 2 minutes from the ER.  We'd epi a LOT more often.   

Wow CM. I'm thankful I don't have a story like that.

So ds:
--reaction #1, before diagnosis, bump on lip, cleared right up with benadryl.
--oral challenge, got that tight cough right away. Cleared up with benadryl. (But I would tell him to epi for that)
--reaction #2, ate at Noodles and Co and I think got swollen lip. Cleared up with benadryl.
--reaction #3 in Israel. I'll have to ask him again what he felt. He epi'd--not sure if it was because it was in his throat or just that he was overseas and not taking any chances (for which I'm grateful.)

So if we go by reaction history, benadryl has served him well. I have no problem with him just using the epi instead, but I've told him he has to then go to the ER, which is obviously really disruptive. I'm wondering if epi and be vigilant is enough. Or even benadryl for a bump on lip (but epi for the cough), and then if *anything* else happens--stomach pain, chest pain, that tickle in the throat--epi and ER.

^ similar-- DD's instructions are specific based upon her past history-- basically, anything grade 3-4 means epi if there is ANY chance of ingestion, and anything like asthma that doesn't respond to bronchodilators, neurological/cardiac symptoms-- always epi, no matter how unlikely ingestion seems. 

We haven't had a known ingestion since DD's diagnosis, btw. 

Everything else has been  xc (mostly never figured out), or completely one-off, environmental exposures that were probably just perfect-storm kinds of things. 


The reaction, as reported in the Today link, is eerily similar to one DD had when she was not yet 3-- as far as we know, there is still no way that this was a "known" ingestion of any of her allergens.  But clearly she had an exposure of some kind. 

  That second phase--{shudders}  SO FAST--

in her case, 3hr after the initial milder reaction (just vomiting) had seemingly resolved-- and then WHAM-- everything seemed to be happening ALL. AT. ONCE. 

  I just wanted things to slow down so that I could THINK....

I just remember yelling-- SO much yelling-- me yelling at DH, DD screaming in pain/panic/distress (until her airways started to go on her, anyway), DH screaming at me "What should we do-- what do you want to do??" and then, especially en route to the ER, 90 seconds away-- both of us screaming at her when she started to lose consciousness. 


{shivers}

Mine is pretty close to that too. Benadryl cream is on my action plan only for localized hives that last over an hour, after washing, with no other symptoms and no known or suspected ingestion. I have very sensitive skin that is highly contact reactive. 

I am getting better at actually following my action plan.  Stories like this reinforce following them every time.

Same.

BensMom, for DS with a known history of anaphylaxis his doctor's instructions are:

For KNOWN ingestion of peanut/tree nut, epi even if no symptoms.
For possible ingestion, epi at first symptom.
For symptoms with no suspected ingestion, epi if two body systems are involved or if he has one system involved but the symptom is chest pain or breathing difficulty (based on his past history).

Ok, wow, I think this is an eye opener for me. DS's reaction history consists of 3 reactions I think. The first was before he was diagnosed. He got a bump on his lip. We gave Benadryl and it cleared up. Second was maybe 2 years ago when he ate out with friends and felt something wrong--not sure what. He took benadryl and was fine. Third was in Israel and he epi'ed immediately. I'll have to ask the difference between the two he had in the past couple years. For a bump or swollen lip, I'd say take benadryl. It's not anaphylaxis.

I'll admit that since ds was diagnosed at age 4 and never had another reaction until age 19, I haven't kept up with reading all the stuff and making sure I'm on top of things. I've heard "epi first", but I guess part of me never asked whether that was just for anaphylaxis or breathing trouble or if it was for even minor reactions.

So what should I be telling DS?

(And it bugs me that the first article said "despite his allergy, he rocked it on the soccer field." What's his allergy got to do with anything??)

This is a tear jerker for sure.

Oakley's parents were on the Today show:

http://www.today.com/health/after-11-year-old-boy-s-sudden-death-mom-warns-t105529

I admire them beyond words for their strength and desire to help others. They've already gotten a letter from someone in the UK, who gave the epipen because of their story.

I just forwarded the link to DD as a reminder, why Epi is most important.  It's going on 4 years since her last anaphylaxis...I don't want her to hesitate either.

Reading this story is reassurance, in a way, for all the times I've Epi'd myself before things got critical, instead of waiting it out like I do way too often.  Because waiting could become way, way worse - you never really know which reactions will stay mild and which ones will blow up.  It's encouragement to keep giving Epi early, despite what some doctors say.  I hope this family's message of just that will ring true with many people with food allergies, their parents, and caregivers.  (And doctors and allergists too!)

Yes-- same, GN-- and I've also reminded DD and her BF that this is exactly the same thing that cost Natalie Giorgi her life.  In spite of having a loving, attentive PHYSICIAN parent there at her side-- in spite of having epinephrine administered in abundance once it became CLEAR that it was very severe anaphylaxis in progress.

The trouble with that is that if you wait for those cardiovascular grade 4-5 symptoms to appear... you may already have reached that 'tipping' point-- beyond which pretty much nothing but a volume resuscitation is successful.     

MEIN GOTT, how I wish that our specialist physicians weren't so afraid of scaring parents and patients with this information-- there is a point beyond which epinephrine is just too little, too late.    It might not be enough to save everyone from a massive/direct ingestion-- no-- but maybe it'd be a step in the right direction. 

My heart just breaks for this family.