Fatal Reaction

[CMdeux]

I wish it were.

But if I had ever truly believed that, I wouldn't have invested the kind of time that I have here over the years. 

It's magical thinking that does that, I think.  Once you've seen a close shave or two, though, I think that a person would have to be delusional to think that it can't happen to themselves.


This is precisely why we are such FREAKS about avoidance, about her wearing her epinephrine, and about never-ever-ever-ever compromising DD's beta-receptors.  People may understand the second, but only very very rarely the first.

[Macabre]

I think Epi upon known ingestion is going back into our rule book. Our allergist never told us this--or may have. I don't remember. But it will be the plan going forward. 

I would think that it's possible there were symptoms, perhaps slight, that weren't recognizable as symptoms.  Several if us have known some of those uncommon symptoms.

Or not--I could see how once it hit the gut how things could have cascaded from there and the first symptoms showed.


This poor family. I am heartbroken for them.

I've told DH. Haven't told DS yet. Not quite sure how.

[rebekahc]

That's so awful!

And so many of us wouldn't Epi if there weren't any symptoms..... I know I wouldn't.

 

Our allergist was very clear in his early action plans - she said immediate epi with known ingestion - with or without symptoms.  So this was when he was 3, 4, 5, and I think around 6 it stopped saying that.   I wonder if that was b/c he would be able to communicate symptoms better as he got older?   When comparing notes with others I only ran across a few people who were told that - but ours was clear.  I think I'm going to get it back in there.

Our plan was that way, too, when DS was younger - peanut/tree nut specific (not for other allergens).  Known ingestion = epi even in the absence of symptoms.  Possible ingestion = epi with any symptom.  No suspected ingestion = epi if two body systems were involved (or for one "red" symptom).

[becca]

So sad.  I am so sorry for her parents loss. 

[hopechap]

I am so sad for them. It breaks my heart that a child died. A child -- one moment celebrating and having fun and doing normal things -- like camp. 

Epi-Pen failed. I would feel betrayed. 

Rice Krispy treats are usually safe.  Girl selected what is usually an ok choice.  That failed.

No, she did not stick to what she herself brought from home. But -- over the years, it gets easy to lapse -- you get away with it many times. Society rewards you -- While many here would be horrified -- my late friend kept sarcastically said to me when I let my kid eat a brownie at a church bake sale affair:  "at least you have relaxed some".  I ignored her. Because I am too tired.  But this is not about me and my choices - even if it does make us reflect.  I too wish people would get over the peanut butter thing for pot lucks -- it just seems antiquated and oblivious to keep bringing it in as a party item. 

I am so sorry. This is a crappy medical condition -- something so innocent as a bite of a sweet should not be able to kill you,

[CMdeux]

http://www.sacbee.com/2013/07/30/5607195/years-of-caution-about-peanut.html


Some additional info here.  She evidently did not have a clear Hx which indicated anaphylaxis potential.  Her family was simply incredibly cautious.  They sound exceptionally well-educated to me. 

Honestly, I have to agree-- it really does sound to me like the family did everything right.  The problem is that when you get over into the cardiovascular effects, everything is "is this just becuase I'm LOOKING for this symptom" until you're in critical condition.  Without any Hx of possible anaphylaxis, most allergists wouldn't be recommending Epi without symptoms.

This child made a simple, single mistake in a lifetime of being careful-- and she paid for it with her life.   

[Scout]

  DH just texted me this story and I immediately came here........OMG

we have traveled to Hawaii and Vegas this month, lots of eating out.....we did get a Suite in Vegas with a full kitchen (that was so clean I didn't want to use it, lol)  at the Signature/MGM Grand.....and ate Breakfast and lunch there....but wow

Taking stock and wow.....this hit me hard...so sad.

MY DH said he was nervous this weekend with all the escalator handles she touched, funny the things you notice.

[from_tahoe]

While this is truly heart breaking, I do have to wonder if the distance from medical care (and unfortunately, the quality) have something to do with it. My local online news source had an article on this even before it was known to be an allergy death. While it doesn't say the name, the location and date are correct, and this is a very small town news source.

Where she was would have been about 20 minutes to the nearest hospital, even by ambulance.  Add to that EMS response time....  Also this hospital by no means is a trauma center.  ANYONE with even a minor heart attack earns an automatic helicopter ride out of the area.  I've been there in three anaphylatic reactions.  Two were treated correctly.  The other time (first anaphylatic reaction ever) I was not given epi, despite breathing issues and a very clear reaction going on.  This hospital is avoided by most locals at all costs.  Hearing about this really scares me.

[maeve]

I just read the article you linked to CM and I'm really upset with the statements of their allergist.  It really seems that they may have been given some poor guidance. 

I cannot tell you how often I am reminded not just by Dr. Wood but also his truly wonderful nurse practioner not to use past reactions as a guideline.  I remember being on the phone with the nurse practioner about something else when I got a call from DD's day care about her last reaction.  I said something to the nurse along the lines that DD's reaction was progressing along the lines of previous reactions and there was a very pointed pause followed by a very clear but gentle admonishment that DD will not always react the way she had in the past.  The nurse practioner was right, that reaction was different, slightly but still different than DD's previous reaction.

[Macabre]

I found this statement by the allergist irresponsible. I would think if a parent of a child with LTFAs is concerned about a symptom, she shouldn't have to be worried that the doctor thinks it is trivial:


"I deal with families who don't even have epinephrine pens and teens who don't have the pens on them. They'll come rushing in to me because they have hives."

[my3guys]

I just left a message with our allergist to change both their plans.

As for the allergist's comment McC, I took it differently.  I took it to mean that some clients don't carry epipens, so they go racing into the office with symptoms (giving hives as an example) instead of carrying their epipens.  I didn't read that as him trivializing hives. <shrug>

[hopechap]

This may be inappropriate raking over details, but I wonder if --- did the Benadryl mask the symptoms? I remember learning this HERE. That Benadryl could do that.

And would like to complain-- if the camp was providing the food why couldn't they have eliminated PB ?? Problematic when asking random individuals to bring in party food -- but not so darn hard when one institution is doing the food -- for a group with an allergic child. I mean would the night have been any less if they had left the damn stuff out ? Would less people have come to camp the following year?  Such a senseless, sad loss of life.

[lakeswimr]

They could eliminate peanuts but thy cant take cross contamination out if everyone's kitchens.  It is a big risk to eat things with no label.   I feel so as for this family.  The answer isn't to make wverone stop using peanut products, though.  You would see more fatalities from Xcode that way. 

[CMdeux]

Honestly, I can't assume that benadryl WILL mask anaphylaxis.  It certainly never has with DD.

If that argument held any water at all, it would be a problem for the thousands of allergic people who are on maintenance antihistamines.  It's not.

It's like a seawall-- it'll hold out a high tide, but not a hurricane surge.  It's not like not having it there makes things "better" or more noticeable, actually.

One problem that I saw as potentially problematic here is that this was a classic fatal reaction; no cutaneous symptoms, and only VERY vague, really subjective symptoms until she was just a few minutes from death when the really overt (and all grade IV+) stuff started and snowballed.  That is what kills teens and young adults, actually.  They lose some of the "classic" allergy symptoms that are grade II and III-- and if those are things that they and their families have come to regard as litmus tests for "is this a reaction?" then they have to be in VERY serious trouble before they realize that they are dealing with in-progress anaphylaxis.  Another thing that surprises people is just how FAST it can happen.  I can't emphasize that enough.  Fatal reactions can be fast.  Breathtakingly fast.   It's surreal. 

No hives doesn't mean no reaction.

Benadryl is irrelevent to that, actually.  DD hasn't reliably manifested hives with anything but minor (contact) reactions since she was about 7yo.    She also doesn't always have audible wheezing.  But she's had blood pressure crashes, which are just as capable of killing.

I've known at least 30 different people to do exactly what this family did-- that is, wait-and-see after a possible small ingestion (remember, the report is that she spit it out and rinsed her mouth).  Only about five of them even paid for it with a trip to the emergency room, and only one of those children required more than ER care for a few hours.  None of them died.  I literally have only known ONE person in all my years with FAS to have administered epi after a probable ingestion-- but with NO symptoms.

As for remote and non-ideal hospital conditions, well... welcome to the West.  I can name on my two hands the number of places it'd be "okay" to anaphylax out here west of the Mississippi.  If you're away from a population center (and geographically, that's a lot of us), then you're going to have a non-ideal hospital experience.  On the other hand, there are less-than-stellar emergency rooms in cities, too. 

I know exactly how this happened.  I just know it.  This girl asked someone in a dimly lit room "what are those?" and someone answered her-- "Oh, they're just rice krispie treats."  So she took one.  Simple misunderstanding-- maybe not something that an adult would have misjudged-- but at 13, I could very easily see my DD doing it with the prepackaged ones, at least.  I'm pretty sure that there is no way that she'd have eaten something that was home-made.  But other people do it all the time.

[SilverLining]

If that argument held any water at all, it would be a problem for the thousands of allergic people who are on maintenance antihistamines.  It's not.

Like me.  (not currently, but previously)