Fatal Reaction

[lakeswimr]

Not to totally derail the thread, but SL I didn't take that doc's blog post rec was based on a single instance.  That just proved a good example for him.

Previous posts had slightly different advice.  This blog post appears to be based on ONE patient that he never met and an instance he did not witness.  How many times does a news article get some facts incorrect or incomplete?

Personally I don't have a problem with it.  I think that he is ringing a bell few would hear if he didn't ring it quite this way.  I am not reading that and thinking, "i'm going to do everything this doctor (who I haven't ever met) says."  I am going to *talk* to my son's doctor about this, though, and get his opinion.  I am going to push for DS to have a plan *at school* that calls for epi with known ingestion.  That's what he had last year even though his plan didn't call for it.  I want that to continue.  I would like it to come from the allergist, though. 

[lakeswimr]

I like the wording in FARE's plan - if FA was definitely eaten. 

[CMdeux]

I agree, Lakeswimr.

Someone (TT?) posted something very similar before Natalie's death about recommendations for administering Epi in a medical setting are not necessarily what's most appropriate for the field.

That may well have been me.  DD had anaphylaxis after SCIT several times-- mild, though, and while they had epi DRAWN for DD, they did 'wait-and-see' with her under observation.

Interestingly, the one time that we suspect that the exposure was peanut (and probably aerosol, not ingestion, certainly) the doc himself never took his eyes off of her.  For half an hour-- and after that, he believed everything we told him about DD and food allergy sensitivity.

He has agreed with our action plan over the years-- by and large.  He has also concurred with the same idea that YKW expressed earlier-- that as parents, we know things about DD and her reaction history that no outsider ever will, and we can judge nuance that others can't.  One of the major reasons why DD hasn't gone into a school setting is that those nuances are frequently all that we have to work with prior to crisis.  She definitely anaphylaxes rapidly-- terrifyingly so-- and if we have difficulty determining when that threshold has been crossed, what hope does anyone else have??

One major problem here is that you can't treat what you don't KNOW is a major exposure.  In this instance?  I personally know of no fewer than 6 or 7 people over the years who have done exactly the same thing (with a variety of allergens) and completely gotten away with it--that is, a bite, not swallowed, followed by COPIOUS amounts of rinsing and observation.   I've seen it happen (with shellfish, at a conference, with unmarked crab dip).

I have to ask myself what we would have done.  The truth is that I'm not sure.  I just can't imagine DD not reacting instantly. 

[twinturbo]

What he is saying isn't out there, though. Other allergists do say it. And it's interesting. Someone (TT?) posted something very similar before Natalie's death about recommendations for administering Epi in a medical setting are not necessarily what's most appropriate for the field.

Mac may be referring to what I wrote in reply to ajas' thread. Here's what I wrote there.

Having had the advantage(?) of seeing the allergist decide when to use epinephrine on DS2 in office during an oral challenge for anaphylaxis he went by the book. I've stopped asking when to use epinephrine in the field because it's going to be me there and not him or her. Me with no monitors to let me know what's happening internally. Me with no medical training or medical staff or adjunctive therapies to epinephrine to back me up.

In light of the topic I'll explain how I got there and from whom. It was after our fifth (?) ER run for both kids total. NIAID had just published its guide for best pratices in anaphylaxis management that unmistakenly named epinephrine as the first line in treatment with all others as adjunctive. Considering the go around I've had various EMS personnel, resident doctors in ERs or other medical persons with wildly conflicting ideas on what constitutes the use of epinephrine, I asked a clarification on NIAID's position amidst the conflict.

Between that National Jewish allergist and our own ped who was very down to earth, the one congruence was: the lowest common denominator for the general public out in the field is to use epinephrine. Adjunctive therapies are to be used by medical professionals in a hospital setting... that the kids need to be in a place with "monitors and doctors and stuff". In the hospital setting I may see all the adjunctive treatments used differently than epinephrine but my threshold as a mom without "monitors and doctors" is lower therefore I'm to use it with lower criteria in the field and that it's my call. Final say on the matter was when in doubt just epi then 911 given our history.

[my3guys]

twinturbo, that makes a boatload of sense to me, thank you for your post!  I don't know why I struggle with when to epi so much...I'm usually a pretty decisive person. 

[Macabre]

Looking at DS' Middle School 504, I was happy to see this (the IHCP was written into the 504 plan.  This was a great idea considering what the ES nurse had DS do after administering Epi during a reaction--had him walk upstairs to get his coat.  )

If ingestion is suspected OR there is throat tightness OR there are two or more symptoms involving any of the body systems above, give EpiPen IMMEDIATELY. Visible hives and swelling are not necessary to administer the EpiPen.

[LinksEtc]

"Lessons From a Teen Food Allergy Tragedy"
http://allergicliving.com/index.php/2013/08/22/lessons-from-a-teen-food-allergy-tragedy/?page=1

[CMdeux]

That's a GREAT pair of interviews.  Thank you very much for posting that, Links.   

The photos of her with her family were heartbreaking.   

[Macabre]

Wow. It might also be good to have that in a thread by itself so we can easily find, though Rayleigh conversation about when to administer Epi would make sense here. I wish we could tag threads--would help with SEO as well.

[LinksEtc]

Do we have a general thread about when to administer epi?

We could link to the action plan thread, this article, the grading cart, etc ....

[maeve]

I loved that article. I'm so glad Dr. Wood is our allergist.  He truly has a way of explaining things quite concisely.

[candyguru]

Great article. 

We gave the epi pen jr only once, for our daughter's reaction to lentils due to her feeling a weak and tired and stomach ache (this reaction seemed much different to her wheat reactions).  Upon arrival at the hospital, she was given a second epi pen jr. Lentil reactions are scary as I'd rank lentils just as scary as peanuts... I guess it is a legume, related to peanuts in a way so be very careful with lentils, split peas, etc.  They also hooked her up to an IV that gave her steroids.  The lentil reactions also did not have many hives ...

Her wheat reactions were always hive only reactions and we didn't give the epi-pen jr (nor did the hospital). 

She never had a reaction to peanuts, nuts, sesame, eggs.. only the skin test was positive.

Reading the article makes me even more likely to use the epi-pen jr now, especially if she had an exposure to peanuts, tree nuts, legumes.

[Macabre]

Erik so you are avoiding peanuts, eggs, sesame and tn bases in skin tests alone?  They have a high rate of false positives.  I would also have the ImmunoCAP test run for those to see if you also see positives there. 

[candyguru]

Erik so you are avoiding peanuts, eggs, sesame and tn bases in skin tests alone?  They have a high rate of false positives.  I would also have the ImmunoCAP test run for those to see if you also see positives there.

Hi Macabre,

Yes, we are avoiding peanuts, tree nuts, and sesame based on skin tests only. I think that's a good idea that we do additional testing.. She just turned 6 so she is due for an ImmunoCap test. Her next allergist appointment is this fall so we'll talk to the allergist about it.  Thanks :-)

As for eggs, we had been avoiding it due to the skin test. I had totally forgotten about her exposure to eggs when someone shot raw eggs into our car earlier this summer and even though she didn't eat the eggs or hit directly, the aerosol / airborne egg mist caused major hives on her face and major swelling of her eyes.

I would love if the peanut skin test was false.. Though after seeing her severe lentil reactions and the consistency of her positive peanut skin test results each year, I am no it holding much hope she is not allergic to peanuts.

[lakeswimr]

There are studies that found 86% and higher of kids diagnosed only by test results are not actually allergic.  I would want a food challenge for at least sesame since it is such a PITA to avoid.  My son can eat lentils and beans but is allergic to peanuts.  not sure the % of kids who are allergic to lentils who are also allergic to peanuts but if it is 50% of less I'd want to challenge that, too.