Why I practice avoidance

[twinturbo]

This is in response to the current ideology that if one is well-planned for anaphylaxis one can nearly eradicate fear, and what I'm starting to interpret as an unwritten message that it's merely a bump in the road.

*I practice avoidance because I have no time to anaphylax...

My husband needs dedicated, contiguous blocks of time to work in higher education. Onset of anaphylaxis is a minimum time expenditure in emergency care of about 10 hours total minimum from onset to symptoms managed or resolves then waiting period for biphasic. If we're lucky we've only lost an entire working day's energy to the point of exhaustion.

He's lost a day of working in higher education dropping behind in productivity by not having the dedicated contiguous blocks of time students (and the tax payer) pay for.

*I can't afford to anaphylax...

Even with a cadillac insurance plan the grand total of ambulance ride, medicines, hospital use is significant. The last rough total I guestimated was about $2000 pre-insurance per episode of anaphylaxis when all is said and done.

That's on top of lost productivity.

* My kids are endangered when I anaphylax...

My kids are anaphylactic to different common allergens. Management for us is a constant tightrope walk but I'm not the first generation of my family in a perilous position. In my mother's time she and her family had to scour for food avoiding murderous bands of marauders. I live in a place and time of relative stability our threats to life mainly medical.

But if I fall they can't help me or take care of me, and my kids are my responsibility. I do not and cannot count on others to helm this daily management responsibility.

* I take a further health risk with every emergency room visit

Hospitals are not full of health. MRSA, C Diff, other surprises. We were discharged early from one visit because the hospital staff deemed at the time that the risk to us from whatever they were treating in a separate room was higher than what appeared to be a solidly resolving case of anaphylaxis.

Prior to the early discharge our assigned nurse tried to use every physical means in the room to protect from "splatter".


There are many real reasons to vigilantly practice avoidance of anaphylaxis triggers, many of which have hard numbers in terms of total cost and additional risk. Even if one is as comfortable as one can get with managing a life-threatening allergic reaction, it's more than injecting yourself (or a loved one) and surviving.

Reducing concerns to a model faced only on fear is overly simplistic.

[booandbrimom]

This is in response to the current ideology that if one is well-planned for anaphylaxis one can nearly eradicate fear...

I think (hope!) that the chance in ideology is changing because people are finally becoming aware of the phobic fear that can often accompany food allergies. Avoidance strategies can rise to the level of a mental illness.

I don't know of anyone who promotes looking at anaphylaxis as just a nuisance. I do know there is a need to balance physical and mental health.

[twinturbo]

Then I should amend or underscore, if necessary, that the motivators are varied beyond conquering fear. That is what I feel is a strong undertone.

Short on time now but will later give a few Mylan sponsored links for perusal, can supply some first person experience in schools including special ed. When I get around to Mendeley maybe toss in a few on emotions and behavior as part of appropriate response to stimulus.

For me on a personal note I came from a working background that required hypervigilance. Continuing that to bring my relevance up to date I'm going further into federal emergency management, the characterizations for preparedness are markedly different.

It's safe to assume I will be in full agreement with whatever is presented on mental health or illness when it is properly diagnosed and truly meets criteria. Clinical isn't what I intend to address.

[CMdeux]

Great topic!!

There are many real reasons to vigilantly practice avoidance of anaphylaxis triggers, many of which have hard numbers in terms of total cost and additional risk. Even if one is as comfortable as one can get with managing a life-threatening allergic reaction, it's more than injecting yourself (or a loved one) and surviving.

Reducing concerns to a model based only on fear is overly simplistic.

I agree.

Though I also agree that the fear itself has to be a rational (not catastrophized) one.  This is, I think, what Boo is also getting at.

 It's one thing to be fearful of air travel if you're my family.  Our allergist encouraged us to have DD wear a mask on any flight where cashews will be served on board.  Just FWIW, I mean.

But it is quite another to be fearful of air travel when you have no history that supports the relative rationality of that fear.

Someone who has a child with severe reaction history to non-ingestion exposures is being "cautious" and someone who is fearful on the basis of a positive SPT to peanuts... probably not.

So I do see both sides of this.

I practice this kind of avoidance with shellfish.  I do not with citrus (my other food allergy).

My DH does not practice this level of avoidance with any of his allergens, all of which seem to be fairly high threshold.  The only one of his that we've NEVER kept in the house for fear of accidental exposure is walnut. 

I'd also like to add, though, that some people with anaphylaxis history have more reason to be wary than others...  just because while deaths are somewhat rare, studying them can give clues.  Allergists often privately believe that the people who are at greatest risk of death are those that anaphylax without typical symptoms (hives, vomiting) and to tiny quantities... and those who anaphylax particularly RAPIDLY. 

This is why our level of avoidance for our DD is far more scrupulous than it is for us.  She has never taken more than ten minutes to reach "peak" anaphylaxis... and hasn't had hives with a major reaction since she was about 7 years old.  She even lacks airway involvement sometimes, and at others, she presents with mostly/only asthma.  Many of her reactions take weeks to 'figure out' in terms of what transpired.  Only a handful have been traceable to ingestion-- and that, of seemingly trustworthy food that was later determined to have been on shared lines.  Many have been from casual contact or inhalation.

Her allergist has expressed a belief (which I also believe, having read the same studies) that this particular cocktail means that even ONE additional instance of anaphylaxis which can be humanly avoided-- SHOULD.  Every spin on this particular roulette wheel seems like a monumentally BAD idea.  Epinephrine aside, I mean.


The psychological burden imposed by episodes of anaphylaxis is also difficult to overstate.  For people who have anaphylaxis history, that alone is a significant factor in aggressive avoidance.  Particularly for the type of person that TT and I (and many others here!) tend to be-- we're gnawers, basically.  Anaphylaxis is an excursion from normalcy that we (mentally) MUST frame in logical, cause-and-effect terms, and we will continue to struggle in 'processing' the event until/unless we can do that.  I have vivid recall of each of my DD's most severe reactions-- and I have adequate explanations (even years later) for only ONE of those five incidents.  Every so often, I take them out and go over them again, hoping that I will have finally picked up "the key" to understanding them... as unlikely as that is now.

[ajasfolks2]

This great topic circles back to the years-old discussions/debates we've had (on boards, with ourselves, our families, our schools, our physicians, etc.) as to definition of strict avoidance and an individual/family's definition of "comfort zone" or "safety zone" . . .


((I so hate that we've lost some of that history with the demise of the place from which we sprung . . . ))

[twinturbo]

Without a doubt interacting with, learning about the experiences of others here, all the areas of effect, doubtless that enters my calculations. As it does my spouse an allergy dad, whom I of course have constant communication with on the topic. His spin is unique in that his experience is that as a male and that his area of study is emotions.

Working within the framework of emotions driving cognition driving actions what else is in play aside from fear? What enters my mind often is me reacting = major PITA.