The research focus on anxiety needs to be euthanized.  It is a dead end with no new salient or novel insights that would translate into meaningful patient benefit.  All it offers is a preferred task for clinicians, easy publications on a vulnerable populations.  Op-eds on allergies get all the attention anyway, and editors know this.   

I'm not on the OIT evangelism train, but even I can recognize that en masse a good portion of those grouped together by bad clinical advice (introduce late, overuse of IgE panels by peds) simply moved on into private practice OIT leaving vocal clinicans stuck on patient anxiety and 'helicopter parents' to sound off in their echo chamber.  Going back to lakeswimr for a moment, her intent may have been to emphasize that there is PLENTY for clinician researchers in allergy to move on now that would result in tangible policy effects by implementing uniform care between clinic and urgent care.

So, all this focus on patient anxiety is an easy task compared to turning efforts inward on the disparities in the continuum of care within the larger industry umbrella.  EMTs come under the Department of Transportation, as do air carriers.  That is clearly as removed from the allergist's office as can be. 

^ Definitely.


Though to be fair, at this point, I'd settle for a stoppage of the general flow of  the variety of mis-information illustrated by the link in the first post, even if better-informed isn't on offer, so to speak.

:/ 

I mean--  baby steps, right?

The frustrating part is that there is a general consensus around the National Institute of Health's guidelines on how to treat anaphylaxis among most allergists in the USA but these guidelines are not making it to critical places which include to all allergists, pediatricians, general practitioners, and ER doctors and nurses in particular.  Our allergist had to call and educate the local ER doctor who argued with me even when I showed her our emergency plan and lectured me on having given the epi without "extreme breathing trouble".  She thankfully listened to the allergist and promised to educate the rest of the ER staff. 

Another area that should do better in this are medical schools.  Why is the treatment of ana not being taught well enough there?  Likewise, paramedic training programs, nursing programs, etc. 

Years ago FAAN started a program to educate ERs and spent money to do this after studies showed that most were not handling ana properly.  Years later other studies showed the same.  Hopefully there was some improvement from the efforts of FAAN but it is still a big problem.  And more so in the UK, apparently, where doctors seem to try to avoid the epi actively for some strange reason. 

People die as a result of this and that's what makes it such a big deal.  Most all fatality stories involve doctors who didn't educate their patients about the risks of food allergies well enough for them to know certain behaviors are not safe and also not well enough in how to recognize and treat anaphylaxis.  Mistakes can happen.  That's what makes people stressed.  But avoidable mistakes due to lack of education from doctors is infuriating.  Doctors perpetuating incorrect information is even worse. 

I see it as largely a problem of good information getting to the right places.

There are some who would say individual compliance with good information is the bigger issue but I think the first is more of the problem.

Medicine is an imperfect art to practice subject to wild swings in development.  That I am sympathetic to.  The greater issue is practitioners that refuse to embrace they are always capable individually or in group to develop and disseminate fallible information.  Like the preference to say "old advice" and "new advice" rather than "we were wrong" or "we gave out bad advice" or "we do not always know better than patients."  I'm really not sure what platform we should be giving them because they seem to be saying more to the public who are NOT part of the patient cohort, than the patient cohort itself. 

Quote from: spacecanada on December 01, 2016, 12:52:48 PM
In light of recent events, and how they relate to the initial article, it really emphasizes how bogus some of the recommendations are.  Okay, I agree that Epi without any symptoms might not be warranted, and maybe one or two other very minor points made in the article are valid (theoretically, anyway, not necessarily in reality), but giving Epi early can save lives.  Articles like this just cloud the waters and make people more hesitant to Epi.

We really, really, need to make people more aware of that fact: early Epi saves lives.

It is so frustrating to know *doctors* give wrong and bad advice to patients about this.  Waiting doesn't make a person safer.  Waiting makes the epi less effective.  Epi without symptoms is not a standard thing but for some people who have known ingestion and have had ana, their doctors do recommend any future known ingestion = epi.  But waiting and making people scared to use it doesn't make sense to me.  I get it that people can get real anxiety from the fear of reactions but the answer to that shouldn't be bad medical advice about when to epi. 

In light of recent events, and how they relate to the initial article, it really emphasizes how bogus some of the recommendations are.  Okay, I agree that Epi without any symptoms might not be warranted for some people (but definitely applicable to some!), and maybe one or two other very minor points made in the article are valid (theoretically, anyway, not necessarily in reality), but giving Epi early can save lives.  Articles like this just cloud the waters and make people more hesitant to Epi.

We really, really, need to make people more aware of that fact: early Epi saves lives.   

http://onlinelibrary.wiley.com/doi/10.1111/cea.12852/full   


this is the anaphylaxis campaign's response to the BSACI new guidelines.

Quote from: lakeswimr on November 29, 2016, 05:49:15 PM
I also don't think you can build up immunity to it.  And if a person is having reactions that frequently they should either look at how this is happening--are they all from food or possibly not food related?  Does the person have MCAS?  Does the person have a yet unidentified food allergy or some cross contamination that they are not realizing is a risk or at the factor level in a food they eat?

f

It took me a while to figure out what I was allergic to, and then how many unlabelled foods were cross contaminated. Since figuring it out, I usually have a reaction about once every 18 months and usually I can figure out to what.

I agree frequent reactions should be looked closer to figure out.

I also don't think you can build up immunity to it.  And if a person is having reactions that frequently they should either look at how this is happening--are they all from food or possibly not food related?  Does the person have MCAS?  Does the person have a yet unidentified food allergy or some cross contamination that they are not realizing is a risk or at the factor level in a food they eat?

I don't think epinephrine is something you can build up an immunity to.

Quote from: Puddles on November 14, 2016, 02:12:57 PM
I've always used Hydrow rower and never had a doctor advise we use the auto injector without definite symptoms beyond hives. The onky risk we had considered was, there have been times when we would have been giving it 4+ times per week for what were not anaphylactic reactions. And my doctor and I felt that was not healthy.

Just saying that's our decision. Not disputing that other doctors feel differently.

Yeah, same here. I don't use it too much because I don't want to build up an immunity to the medicine.

Simply scary.  Epi works best when given early; within 20-30 min max.  Waiting makes it less effective, not more as the author suggests.  I have long felt very frustrated reading stories out of the UK regarding FA fatalities and people who have severe reactions but are not given epi.  The doctors there seem to overall have a very different point of view on ana that I don't believe is supported by research. 

Yikes this article.

But these doctors are all in England and Ireland, which is enough info for me to put this in perspective. I know that in the U.K. They typically have very different standards than the US has. And I trust what US doctors say about this. I've thought that UK docs are doing harm by their recommendations for using epinephrine. This is not different.

That moment of wilting fright when CMdeux is serving some serious truth tea and I want my teddy bear.  It's always the stuff I don't wanna know, but realize not knowing is worse. 

I probably shouldn't have read that.

But, who are they and why are they writing that?  Did someone ask them to come up with an opinion, or has there been a bunch of people, with food allergies, with prescriptions from doctors, injecting themselves because they thought they should?

Honestly.  If I could I'd crumple up their whatever that was and toss it back at them.

Has anyone ever really read a persons recounting of an experience like that .... meaning someone retelling their own story, or one of their children's stories...... anywhere..... where it was about how they used their auto injector even though they had no symptoms?  Or, that this is some widespread occurrence or philosophy circulating around in the FA population?

I have to believe that this is a case of more busybody people who have to publish something about something that they don't live with, that ends up becoming nonsense that well meaning friends and family quote to you over the holidays, or clip/print/link to send to you to be helpful.