Fatal Reaction

[Macabre]

Well SL, do you have a problem with our promoting the anaphylaxis grading chart as much as we do here? Same thing, different set of criteria for administering Epi.

Many doctors do prescribe Epi upon known ingestion. Every bit of research says sooner rather than later (scroll down to see a recent tweet underscoring this). 

Honestly, many US allergists (and I would say Brit ones) do not give clear direction on when to give it--or say to give it later than others do. Now, we (my fam) have tended to go see gurus, but how are even they to say when exactly I should give myself an Epi outside of a crisis moment?  When I am in the office, is their standard spiel going to be what works for me in the midst of a reaction?  Possibly. Possibly not.

I frankly don't see the point of only listening to my doctor about this.  I do see the point of reading and taking in current thought on beat practices--which changes over time.

[LinksEtc]

SL, the article made me a little uncomfortable ... I think it's ok to discuss whether maybe the guidelines need adjusting, but it's another to advise patients to do something other than what the patient's personal allergist wrote on their FA action plan.

[YouKnowWho]

We went to the remote location of our allergist's office today.  I had no idea it would be so busy (many of his patients are OTP and his main office is ITP but it is also the start of school here in a few days).  Do you know how many times I heard him answer "Yes to Epi if known ingestion?"  Every single time - even took phone calls, as well as the office staff.  Many of his patients want that information changed on their action plan.

I might hesitate at home, and that is a horrible thought.  I know not every reaction will be the same but I also know key words and when to worry vs when to watch.  However school does not know my kids the way I do.  I need them to be on the ball.

This death hit home for many of us. 

[SilverLining]

Well SL, do you have a problem with our promoting the anaphylaxis grading chart as much as we do here? Same thing, different set of criteria for administering Epi.

I haven't seen that the grading chart is based on ONE instance.  (Or is this doctor using one instance to get traffic?  I'm not sure.)

Either way, he is a doctor, who was not there, never saw the patient, and as LinksEtc said, he's possibly advising against a person's own physician. 

[YouKnowWho]

Well SL, do you have a problem with our promoting the anaphylaxis grading chart as much as we do here? Same thing, different set of criteria for administering Epi.

I haven't seen that the grading chart is based on ONE instance.  (Or is this doctor using one instance to get traffic?  I'm not sure.)

Either way, he is a doctor, who was not there, never saw the patient, and as LinksEtc said, he's possibly advising against a person's own physician.

True - but it was definitely the topic of conversation at the allergist's office today for us and many others.  School is getting ready to start and the forms need to be filled out.  I would rather the nurse erred on the side of caution given that while she is friendly with my kids (and I am blessed to be in a small school where that can happen, I am also at the mercy of the school district if they move her or cut her funding), would she know the words that my kids use when a reaction is happening.  I have been working with both kids on being clearer - what does icky mean, does it mean you cannot control your bowels or you are going to throw up or you feel like you are having an out of body experience.  That might be a hard statement for an adult to justify in the midst of a reaction, let alone a child, kwim?

We did change to epi on ingestion.  Sadly, I may need to change that mindset for myself and not just for the school.  I know it doesn't take much for DS1 to react.  And there have been times when it meant flour in the air causing coughing/asthmatic issues that could be much more serious but I give Bendaryl and pray.

[Ree]

I'm so saddened, distraught, angry, confused...I could go on and on.  Every time I hear about a food allergy loss, I can't seem to wrap my brain around the fact that our bodies can self-destruct from a food that nourishes the bodies of others. 

I may have missed this info somewhere but wondering..

1)  Did she have asthma?
2)  Could the Epi-pens have been expired?

Continued prayers for Natalie and her family...

[hopechap]

Many PA people DO take that risk. I am not the only one. And several of the adults I know with PA do -- they don't live out of a lunchbox.  But whenever this happens -- I do tighten control again.

Careful family? Yes.  How many of you carry three Epi? I always carry two. 
My rule for risk -taking is always -- only when your parents are with you -- not fair to give a known risk to teachers and others.  But then my child began breaking the rule -- buying cinnamon rolls from the cafeteria for breakfast. part of fourth grade cool in private school is sauntering into cafeteria for breakfast and tea. Caught him when I looked at online account details.  Not about me and I could be very very wrong in allowing this. But with this said -- yes, most PA people I know eat pretty normally. And they sometimes have trouble with it. Three adult friends have had trouble with bakeries. So - what happened to FAHF-2 darn it? That was supposed to tame reactions from severe to mild.

No, I do not blame the family at all.

[Macabre]

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.

The difference between him and the grading chart is that the chart was approved by an organization.

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.

I'm not convinced that what my own doctor tells me is sacred. Or even special. DS' first allergist said we didn't need an Epi. Burks said you don't have anaphylaxis without ingestion.  My Duke allergist initially told me I couldn't have anaphylaxis from shrimp (though I had a couple of years earlier) then my next visit said of course I could. Sooooo glad I didn't listen to him the first time. Well, I did eat grilled chicken at a restaurant. The second time I did that I had a reaction.

I do know other docs have tweeted about earlier Epi admin--citing this blog post.
I don't know whether he was right or wrong for him to post what he did as a general recommendation. I do know that it's not that far from what I see other allergists doing on twitter.

And I do know it's a good thing so many here didn't just follow their doctors' recs  for managing FAs. They learned more about managing FAs here than from their docs. As did I.

[hopechap]

Which is kind of a huge problem. I cannot even enumerate the conflicting and bad advice doctors give on food allergy. As everyone here can too. Perhaps some of the reason is that reaction is mercurial -- always exceptions -- a mild reactor one day has a major. Heck. MT SINAI has said contradictory things to me about what kind of reaction son could have and how to address it.

[SilverLining]

The difference between him and the grading chart is that the chart was approved by an organization.

EXACTLY!

That's half the problem.

[SilverLining]

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?

[becca]

The article makes a lot of sense to me.  I agree with McC, that he is using this case as an example, it illustrate a larger point.  and, fact is, we will never know if she would have survived even if she got her epi right away.  We all want to think so for obvious reasons.  But, we will never know. 

Our action plans have never included benadryl, ever.  Frankly, I only ever heard of administering benadryl early in a reaction on the forum, when it was another place.  On our school forms, our allergist was always about the epi if any known ingestion.  Period.  This was specifically to avoid wasting time on the benadryl if epi is needed. 

Of course, this is the same allergist that never allowed dd to eat the baked eggs she safely ate her entire life(until he told us to stop), and now eats again.  They are not perfect.  He errs on the side of caution because my child's life is in his hands based on his advice. 

Currently our ped follows out allergy and I fill out the plan, and just drop it to be signed.  I have a new ped for dd this year.  Will have to see if she changes anything I fill out.  My other guy would sigh whatever I specified, but it was what the allergist had recommended wrt epi administration.  I just needed a new signature each year. 

I think I have access to emailing dd's new ped.  I think I will send her a link to the article here and to the death of Natalie, on the chance she has not read about it or heard about it yet. 

And, I checked all our epis and they are *all* expiring this month or next.  Wish me luck with my new insurance.  I try to have 3 sets.  One at home at all times, with dd, and at school. 

[my3guys]

I'm sure most of us have seen this food allergy action plan.  I like the updates to it.

http://www.foodallergy.org/document.doc?id=125

We're off to the allergist today.  I spoke to our allergist yesterday, so I'm reporting back SL. He's happy to complete the forms however we request.  He reiterated there's no harm to giving epi early without symptoms.

He had read all the accounts he could find regarding this death.  He still has questions on timing of epi -- he said the vast majority of studies show that epi works when given promptly at first sign of symptoms.

He circled back to our old discussion that depending on reaction history, he doesn't automatically order epi without symptoms because some schools can over-react and child will possibly get some unnecessary epis, trips to the hospital.  And he reiterated again that there's no medical danger, there's an emotional toll on the child.

***** Now this is just his take, I'm not taking it as gospel, and don't want anyone else to either.  DH and I talked and I think we're going to go with the more aggressive action plan.

[SilverLining]

I'm glad you and our doctor agree on course of action. 

[my3guys]

Ack -- Just looked at the official town forms.  Choices are:

1) administer epi immediately upon known/suspected exposure to allergen.

2) administer epi with symptoms of anaphylaxis

I don't like the word exposure. Too open and vague.  My kids have other allergens that they react mildly to with ingestion even.