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Author Topic: Another tragedy .... so sad  (Read 708 times)

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Offline spacecanada

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Re: Another tragedy .... so sad
« Reply #15 on: December 06, 2016, 07:25:50 PM »
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.
anaphylaxis to tree nuts, peanuts, and potatoes; severe dairy intolerance; vegan (preference)
family members allergic to dairy, egg, peanut, sesame, shellfish

Offline CMdeux

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Re: Another tragedy .... so sad
« Reply #16 on: December 06, 2016, 10:41:12 PM »
^ 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}




Resistance isn't futile.  It's voltage divided by current. 

Western U.S.

Offline BensMom

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Re: Another tragedy .... so sad
« Reply #17 on: December 07, 2016, 10:21:23 AM »
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.

Offline CMdeux

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Re: Another tragedy .... so sad
« Reply #18 on: December 07, 2016, 03:48:34 PM »
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.   

« Last Edit: December 07, 2016, 03:50:56 PM by CMdeux »
Resistance isn't futile.  It's voltage divided by current. 

Western U.S.

Offline BensMom

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Re: Another tragedy .... so sad
« Reply #19 on: December 07, 2016, 04:32:03 PM »
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.
« Last Edit: December 07, 2016, 04:33:35 PM by BensMom »

Offline CMdeux

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Re: Another tragedy .... so sad
« Reply #20 on: December 07, 2016, 05:21:04 PM »
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 (click to show/hide)

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

Resistance isn't futile.  It's voltage divided by current. 

Western U.S.

Offline Janelle205

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Re: Another tragedy .... so sad
« Reply #21 on: December 07, 2016, 05:24:18 PM »
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.
Allergic to soy, egg, tomato, apple, cherry, peach, pear, nectarine, canteloupe, watermelon, severe OAS to others, insect bites (severe to horseflies), various drugs, way too many environmental allergens, and asthma.

Offline my3guys

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Re: Another tragedy .... so sad
« Reply #22 on: December 08, 2016, 12:35:13 PM »
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. :-/