Last night I had a reaction that confused me.
I was having severe abdominal pain accompanied with bouts of :misspeak: Along with this, I was wheezing when breathing in. I usually Epi-pen but after being told that I am too quick to Epi-pen I didn't.
Looking at the grading chart, I would say it was a 4. It really frightened me and I feel fortunate nothing else happened.
I just have this fear of using the Epi-pen too early or not early enough.
The next time this happens, should I definitely Epi-pen?
Quote from: notashrimpwimp on February 02, 2012, 12:28:08 PM
I usually Epi-pen but after being told that I am too quick to Epi-pen I didn't.
Who told you that you are too quick to Epi?
Did you discuss this experience with your allergist? Do you have a written allergy action plan?
I'm glad that you are ok :heart:
Yeah, I'd say go by the chart and epi for anything more than grade I - whoever told you you were epi'ing too early is a putz.
Agreed. Putz there would be a technical term, probably kinder than deserved under the circumstances, considering that this individual's opinion might cause you to lose your life at some point.
I'm glad that you are okay--
now, DO NOT count on a similar reaction turning out so well ever again.
You know that breathing difficulty = automatic epi pen. YOu know that systemic reaction = epi pen. I'm not sure why you are questioning this. if your DOCTOR is telling you that these are not times to epi please fine a new doctor who specializes in food allergies. Do you have a written emergency plan? Is it a good one? if so, follow it. if not then get a new doctor and a good written plan. FAAN's plan is pretty good. You could print that out and have your doctor sign it. Does your allergist specialize in food allergies? I worry about you.
I'm also quite curious as to who said you epi to quickly. How often have you needed it?
The person who told me this was the ER doctor. She advised me to practice deep breathing when I start to feel my throat tightening.
Both allergists I went to stated that I wasn't using my Epi over much, as it is usually 4-6 months between significant episodes.
:rofl:
breathe deeply?? :dunce:
Yeah, good advice for a panic attack, but not so much for anaphylaxis. What, should you wait until you STOP breathing? Or just until your heart quits on you? I'm just curious about what would be appropriate in this physician's mind.
Next time someone at the ER gives you that particular song and dance, whip out a copy of the technical version of the anaphylaxis grading chart and the accompanying citation (it's a Pediatrics article, and Hugh Sampson is one of the authors)... and ask exactly where THEY would advise you to administerr epinephrine in that scheme.
If you're feeling particularly saucy at that point, you could ask if they really think that they have greater expertise with food anaphylaxis than: a) you, b) your board-certified SPECIALIST physicians, and c) the authors of that paper.
<sarcasm>
Because that must be some expertise. GOSH. What an opportunity for you to "learn" from a master. ~)</sarcasm>
Then point out that every study on the subject-- EVER-- shows that anaphylaxis presenting in ED/ER settings is: a) grossly mismanaged, and b) even MORE grossly under-recognized to begin with. :paddle:
Quote from: CMdeux on February 07, 2012, 11:13:09 AM
:rofl:
breathe deeply?? :dunce:
Yeah, good advice for a panic attack, but not so much for anaphylaxis.
I suspect that's what the doctor thinks is happening...a panic attack. And for me, the deep breathing worked. I was able to tell the difference between an allergic reaction and a panic attack because many of MINE were panic, and those that were allergic were often not anahylactic. They were allergic reactions and the symptoms were worst BECAUSE of my anxiety.
notashrimpwimp, I knew mine were anxiety and I was able to comtrol that way. And mine were happening daily, not a few times a year.
Exactly. I think that most of us probably do try applying common sense... er... before epinephrine. ;)
But it's pretty hard to take the advice to "breathe deeply" when breathing at all is problematic. :-/
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.
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.
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.
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.
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 (http://www.bccdc.ca/NR/rdonlyres/...A6E8.../1GustafsonAnaphylaxis.pdf)
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.
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?
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.
It's down right frightening :disappointed:
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!
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
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.
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 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 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.
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