Pa.com questionable answer

[CMdeux]

Right-- and this is why it is something that SHOULD be determined in advance with a physician.

Someone with severe anaphylaxis Hx is going to be treating aggressively rather than conservatively in that situation because the risk-benefit calculation is quite different for that person.

[twinturbo]

@jschwab. I'm not sure I'm answering your question, I'm not sure there's a centralized question in there. This may or may not be satisfactory.

You ask what we here at FAS (is that correct?) think what someone else should do. That's not a perspective I share. What I find in my experience here at FAS is support from a group that is extremely well versed in both the history of well documented conventional knowledge of IgE-mediated allergies and what is on the bleeding edge of where treatment is going. Many of those here operate by considerable experience, advisement and/or guidance from some of the leaders of immunology research and treatment; rely mainly on published articles (as opposed to op-eds) in well respected journals (not magazines); Code of Federal Regulations, legal decisions, settlements, and agreements; and last but not least hard bought experience. Some of us find our past industry experience is applicable to anaphylaxis management directly or indirectly in the most surprising ways.

I've found that management for an infant, for a special needs toddler, for a young developing boy or girl, for a tween, for a teen, all is different than me as an adult. I've also read enough hard data from enough credible sources to recognize that, as allergen agnostic as I am with so many confirmed allergens that are of clinical significance to my kids, that not all allergens are created equal. That some proteins are more durable, come in a form factor that are more easily spread to contaminate, are much less likely to ever be outgrown, have a significantly higher mortality rate, and have some of the lowest dosages to elicit reactions.

I also know that insurance companies aren't always sympathetic to years of paying $2k plus for every reaction--and that's minimal ambulance plus 4-6 hour stay. And I know even then I'm lucky to be insured in the first place. I know that parents are barely able to work in some cases dealing with school nonsense.

It's a personal decision to eat your allergen in the privacy of your own home. It's a personal decision to eat a food highly contaminated with an extremely potent allergen with a high mortality rate. It's also an extreme disservice for a content farm website for the sake of increasing traffic to publish such horribly dangerous misinformation that is likely to put an individual at higher risk under the guise of "medical advice", especially when it intersects with social pressure from a loved one at developmental ages more prone to that social pressure.

We respect each other's comfort zones, the dynamic factors we must each put in our risk-reward calculus. Unfortunately there is not much traction in this branch of medicine and because its acceptance in the public eye is more closely related to a lifestyle model than disease, our Achilles heel has been co-opted successfully to the point of obscuring IgE-mediation. What does allergy mean? Why is it important? Why must we adhere to standards? Because total avoidance is our only prescriptive choice. There is no high tech answer, nothing to mediate per instance.

I think you'll find why that torch is carried so vigilantly from person to person within a well-read support group who see Sicherer, Wood, Burks, and are more likely to read their research rather than only read what blurbs a magazine author brings into print. With all due respect to the docs I'm more than bleepin' ready to go back to a carefree lifestyle. Give me something else besides total strict avoidance.

In all this I also think we all realize to a certain degree we occupy the bad spot on the bell curve, the area that isn't often studied due to severity. Besides sucking mightily we will be the first ones to tell anyone that was done disservice by a naturopath or IgG or sloppy testing that before they try to live in strict avoidance make sure you actually are allergic. No history, bad testing, eats allergen all the time. Congrats!

As to what individuals should be doing on their own I highly doubt anyone is in great need to judge. What nonsense rears up vying for credibility then dishes out horrible 'medical' advice under a banner that supposedly represents us as a group? Yeah, gonna call bullcrap in response.

[CMdeux]

+1^

and applause, tyvm.   

[Macabre]

I love Twinturbo so much.

[SilverLining]

All instruction I have heard is to administer again in 5 minutes if no improvement. That is in our plan.

I believe there are also directions to re-administer if symptoms recur.

[candyguru]

My daughter needed two epi pen jr injections (20 mins apart) when she had her severe reaction to lentils.  That is the only time 2 doses were needed in our experience. Plus when arriving at the ER she was hooked up to an IV.  A severe allergic reaction is more scary to me than a second epi pen jr injection.  Life is difficult and stressful with young kids when things happen... not surprised I am getting grey hairs this past year.

[buttons]

tt.   That post is sublime.

[SilverLining]

Candyguru, was she in hospital or ambulance when she got the second?  Or did you have to administer?

(Just thinking, in twenty minutes the ambulance should be there.  If not, we have a problem here.)

[Jessica]

We live more than 20 minutes drive from a hospital. Even at high speed.

[SilverLining]

CG does not. 

My question was not I reference to whether he should have administered to, but rather whether he was required to do it.

ETA:  many doctors recommend a person carry two.  While there is a risk of a misfire, the main reason to have two is in case you need two, isn't it.

[jschwab]

@jschwab. I'm not sure I'm answering your question, I'm not sure there's a centralized question in there. This may or may not be satisfactory.

You ask what we here at FAS (is that correct?) think what someone else should do. That's not a perspective I share. What I find in my experience here at FAS is support from a group that is extremely well versed in both the history of well documented conventional knowledge of IgE-mediated allergies and what is on the bleeding edge of where treatment is going. Many of those here operate by considerable experience, advisement and/or guidance from some of the leaders of immunology research and treatment; rely mainly on published articles (as opposed to op-eds) in well respected journals (not magazines); Code of Federal Regulations, legal decisions, settlements, and agreements; and last but not least hard bought experience. Some of us find our past industry experience is applicable to anaphylaxis management directly or indirectly in the most surprising ways.

I've found that management for an infant, for a special needs toddler, for a young developing boy or girl, for a tween, for a teen, all is different than me as an adult. I've also read enough hard data from enough credible sources to recognize that, as allergen agnostic as I am with so many confirmed allergens that are of clinical significance to my kids, that not all allergens are created equal. That some proteins are more durable, come in a form factor that are more easily spread to contaminate, are much less likely to ever be outgrown, have a significantly higher mortality rate, and have some of the lowest dosages to elicit reactions.

I also know that insurance companies aren't always sympathetic to years of paying $2k plus for every reaction--and that's minimal ambulance plus 4-6 hour stay. And I know even then I'm lucky to be insured in the first place. I know that parents are barely able to work in some cases dealing with school nonsense.

It's a personal decision to eat your allergen in the privacy of your own home. It's a personal decision to eat a food highly contaminated with an extremely potent allergen with a high mortality rate. It's also an extreme disservice for a content farm website for the sake of increasing traffic to publish such horribly dangerous misinformation that is likely to put an individual at higher risk under the guise of "medical advice", especially when it intersects with social pressure from a loved one at developmental ages more prone to that social pressure.

We respect each other's comfort zones, the dynamic factors we must each put in our risk-reward calculus. Unfortunately there is not much traction in this branch of medicine and because its acceptance in the public eye is more closely related to a lifestyle model than disease, our Achilles heel has been co-opted successfully to the point of obscuring IgE-mediation. What does allergy mean? Why is it important? Why must we adhere to standards? Because total avoidance is our only prescriptive choice. There is no high tech answer, nothing to mediate per instance.

I think you'll find why that torch is carried so vigilantly from person to person within a well-read support group who see Sicherer, Wood, Burks, and are more likely to read their research rather than only read what blurbs a magazine author brings into print. With all due respect to the docs I'm more than bleepin' ready to go back to a carefree lifestyle. Give me something else besides total strict avoidance.

In all this I also think we all realize to a certain degree we occupy the bad spot on the bell curve, the area that isn't often studied due to severity. Besides sucking mightily we will be the first ones to tell anyone that was done disservice by a naturopath or IgG or sloppy testing that before they try to live in strict avoidance make sure you actually are allergic. No history, bad testing, eats allergen all the time. Congrats!

As to what individuals should be doing on their own I highly doubt anyone is in great need to judge. What nonsense rears up vying for credibility then dishes out horrible 'medical' advice under a banner that supposedly represents us as a group? Yeah, gonna call bullcrap in response.

My question was more rhetorical than anything else. I think I was just trying to puzzle out on paper whether the advice was actually as irresponsible as it seems, given common medical understanding of the issue and what the real world looks like for most people who may not have all the resources (discipline, intellectual, family support, access to information and care) that those who are most careful in their management can be. There are so many areas in public health where compliance is a huge factor in staying well, but where most people and most experts recognize that 100% compliance is not always going to happen. I was not really being critical of anyone taking issue with the article. I was more trying to figure out if the article more accurately reflects common understanding of how allergies should be handled when strict compliance is tough for people.  I myself have given similar advice to people who I knew were going to take chances anyway, KWIM? I literally have no idea what most people are told about managing their allergies in the real world so I was kind of curious if this was being criticized from the perspective of a stricter standard for compliance or was actually in direct contravention to standard medical advice. I think you answered that very well. Thanks.

[Jessica]

CG does not. 

My question was not I reference to whether he should have administered to, but rather whether he was required to do it.

ETA:  many doctors recommend a person carry two.  While there is a risk of a misfire, the main reason to have two is in case you need two, isn't it.

Not to mention that I'm not even sure you can buy singles anymore. Aren't they always sold in twin packs these days?

[candyguru]

Candyguru, was she in hospital or ambulance when she got the second?  Or did you have to administer?

(Just thinking, in twenty minutes the ambulance should be there.  If not, we have a problem here.)

The ambulance arrived within about 6 minutes (we had already given her an epi-pen before they arrived). We arrived at North York General, and they gave her another shot (they did not use our epi pen Jr) when we arrived as she needed it (weakness, lower blood pressure, stomach ache, breathing issues). 

So the second injection was given in the ER, but had we been outside the city, and more than 20 mins from an ambulance, I would have given the second epi pen even if we could not have reached a doctor to ask, as I have always been informed that an epi pen may wear off in 15 to 20 mins and symptoms could intensify.

[SilverLining]

CG does not. 

My question was not I reference to whether he should have administered to, but rather whether he was required to do it.

ETA:  many doctors recommend a person carry two.  While there is a risk of a misfire, the main reason to have two is in case you need two, isn't it.

Not to mention that I'm not even sure you can buy singles anymore. Aren't they always sold in twin packs these days?

They've never been sold in twin packs here.

[SilverLining]

Candyguru, was she in hospital or ambulance when she got the second?  Or did you have to administer?

(Just thinking, in twenty minutes the ambulance should be there.  If not, we have a problem here.)

The ambulance arrived within about 6 minutes (we had already given her an epi-pen before they arrived). We arrived at North York General, and they gave her another shot (they did not use our epi pen Jr) when we arrived as she needed it (weakness, lower blood pressure, stomach ache, breathing issues). 

So the second injection was given in the ER, but had we been outside the city, and more than 20 mins from an ambulance, I would have given the second epi pen even if we could not have reached a doctor to ask, as I have always been informed that an epi pen may wear off in 15 to 20 mins and symptoms could intensify.

I'm not at all questioning whether it would have been appropriate for you to give a second dose yourself.

I was just wanting to be sure the ambulance arrived that quick...because I know they should have.