Quote from: notashrimpwimp on February 12, 2012, 03:09:52 AM
I have an action plan that my allergist gave. Currently my aunt is the only one who carries it when she's with me. But, both allergists and my primary care physician say that when there's throat involvement I should epi.

It just seems to go in cycles, when I can go for months with no issue and then boom a reaction.

So, do you carry it on you?  You really should if you don't.

Do you have a Medic Alert bracelet/account?

Adrienne

I have an action plan that my allergist gave. Currently my aunt is the only one who carries it when she's with me. But, both allergists and my primary care physician say that when there's throat involvement I should epi.

It just seems to go in cycles, when I can go for months with no issue and then boom a reaction.

I had a Peds ER physician who was convinced DS1 has Celiac (we were not there for an allergic reaction).  I explained DS1 has ana rnxs to wheat, rye and barley so we were not able to do bloodwork because he can not eat enough gluten to register for the Celiac test and that we had to delay a scope because of a past illness.  Same doctor ripped me a new one because he handed my son a popsicle with no ingredients on the packaging and I asked to see the outside package.  He had the nerve to tell me that I read too many ingredient lists and that my son needed to eat gluten to be tested for Celiac.

Keep in mind, my son tests at a Class 6 for wheat, rye and barley and has been at that ER for an ana rxn to trace amounts of barley.

In the process of going through patient relations now...

I have asked before--do you have a clear written plan for when to use the epi pen?  If not you can print out this one and have your doctor sign it and use it.

Editing out the link at the request of the moderators.

If you have not looked at the above plan I hope you will take a minute to do so.  It is not even as conservative as my son's plan.  My son's plan calls for giving the epi with any known or suspect ingestion of allergen that results in anymore more than minor localized hives (any time a reaction is systemic).  Please check this plan against your symptoms you had and see what it says to do.

If your allergist did not give you a somewhat similar written plan I'd be out the door looking for a new allergist.  Vague descriptions of when to epi can cause people to not give it when it is needed.  You have been posting about very scary sounding reactions for several years and always sound confused as to when to epi.   There are times when things are grey but what you have described are very serious reactions that pretty much all allergists would say call for the epi pen. The fact that you are still unsure when to epi worries me.

ER staff unfortunately has been studied and found multiple times to be severely lacking in understanding of anaphylaxis.  For some reason they do everything but give the epi pen even though the NIH, etc all say the only first line treatment of ana is the epi pen. I would not go by what an ER doctor had to say.  You may have to pull out your written plan and show the doctor in the ER.  I have had to do this.

We all care about you and want you to stay alive and well!  Please take good care!

I'm going to stick with using it when I feel I need to. My doctor looked shocked I didn't this last time, which makes me think that although everything turned out fine...it might not have. I can't imagine how my fiance would feel seeing me pass that way.

Quote from: notashrimpwimp on February 08, 2012, 12:10:50 AM
Here's the part that gets me: she assessed me and said that I was having a severe allergic reaction with swelling in the throat, but in the future I should administer benadryl and my inhaler and then allow them to decide if I need to be epi'ed or not.

I feel confused, bewildered, and a little upset.

NOTRIGHT NOTRIGHT NOTRIGHT

Trust your ALLERGISTS, not the ER doctor. Further, tell your allergist what the ER doctor said. Get the name of that ER doctor from the orders/visit and give it to your allergist.

I know it's tough when we hear different things from different doctors. Your allergist is your specialist and knows you better than an ER doctor. ER doctors, can, chastise patients sometimes. So take the comments back to your allergist/specialist and get their opinion.

Noting, not all ER doctors are bad, but most of us here have run into poor ones.

Adrienne

It's down right frightening   
When C was 9 mths old, I almost epi'd him myself while the ER doc stood there twiddling her thumbs.  She finally gave it to him, but noted it was at "moms request".  Yes, I request my baby not die, TYVM!

Yes.  Either that or the nearly identical one that was conducted several years later.

What is depressing about that pair of studies is that so little progress was made in the interim.   

Equally distressing:

a similarly 'twinned' pair of studies regarding anaphylaxis treatment in ER/ED's-- really, there was only  about a 4% gain in the rate of epinephrine usage over a period of a decade.  That decade was between the late 90's and now, by the way.  ER docs are not well educated, and it doesn't seem to be improving.

My take on that statistic is that:

A lack of cutaneous symptoms leads to under-recognition of anaphylaxis and therefore a greater chance of non-treatment and ultimately death.

rather than

Anaphylaxis presenting without cutaneous symptoms is more likely to be fatal.

But, either way, it's a good thing to pound into mention to the dangerously misinformed (especially medical providers).

Any idea where the "A series of 30 fatal or near fatal anaphylaxis suggested that epinephrine is most effective when given in the initial 30 minutes of the reaction" might have come from?  Same study?

The Sinai study of 31 fatal/near fatal cases of food anaphylaxis is the one that found that only a minority of FATAL reactions (as opposed to non-fatal ones in the study) included cutaneous features.   At meetings and such, this has apparently been borne out by wide anecdote to the point of consensus, as well. 

Our allergist (who is a real research paper hound, I might add) has mentioned this particular risk factor to DD, DH, and myself repeatedly, because DD does NOT tend to present with cutaneous symptoms.

That makes delaying (er-- or hoping that someone else-- like, say, an ER doc-- will treat you appropriately?) MUCH more dangerous, because few others are likely to recognize what they are seeing as anaphylaxis.  Ergo, if you don't treat properly, it's unlikely that anyone else will, either.

I found a PDF presentation on anaphylaxis geared toward teaching nurses what to look for in vaccine induced anaphylaxis.  The author states, "Since there are very few cases of fatal anaphylaxis due to vaccines, we need to extrapolate from what we know about fatal anaphylaxis due to other antigens" and includes a few really good pages with information.  Unfortunately, there are no references cited. 

A couple of the pages:

QuoteDanger signs in anaphylaxis

•Early onset after exposure to antigen
•Rapid progression
•Evidence of respiratory distress
•Evidence of hypoperfusion: eg: syncope

NOTE: Cutaneous symptoms are present in only a minority of fatal cases of anaphylaxis

QuoteModifiable risk factors for fatal anaphylaxis

Delayed or no administration of epinephrine:
     –Early administration of ephinephrineappears to be critical for survival after severe anaphylaxis
     –A series of 30 fatal or near fatal anaphylaxis suggested that epinephrine is most effective when given in the initial 30 minutes of
       the reaction.

Upright position
     –Empty ventricle syndrome leading to pulseless electrical activity

Misdiagnosis

Unwitnessed

www.bccdc.ca/NR/rdonlyres/...A6E8.../1GustafsonAnaphylaxis.pdf

Quote from: notashrimpwimp on February 08, 2012, 12:10:50 AM
Here's the part that gets me: she assessed me and said that I was having a severe allergic reaction with swelling in the throat, but in the future I should administer benadryl and my inhaler and then allow them to decide if I need to be epi'ed or not.

I feel confused, bewildered, and a little upset.

Mmm hmm - PUTZ.  What's the point of an Epi autoinjector if it's not intended for the patient to use??

To quote my allergist:
The only thing proven to prevent death from anaphylaxis is early administration of epinepherine.

Please don't follow that advice.  Many of us have been given bad advice from doctors who are not experts in dealing with food allergies.  If you have a good allergist, please talk to them for advice on how to treat your reactions if you are unsure what to do.  If you don't have a good allergist, then find a new one.

Here's the part that gets me: she assessed me and said that I was having a severe allergic reaction with swelling in the throat, but in the future I should administer benadryl and my inhaler and then allow them to decide if I need to be epi'ed or not.

I feel confused, bewildered, and a little upset.

Yup.  I personally love it when helpful passers-by advise me to 'take a deep breath' when I'm having an asthma attack.  It's probably a good thing that I'm too out of breath at the point to make obnoxious comments.