When you don't know what to make of allergist app't

[ajasfolks2]

Quoting from another thread, because I really want some opinions and advice here on this.

Hey, as to definition of anaphylaxis and when/if to use Epi, I VERY recently had allergist flat out tell us that "only hives" would require that breathing be affected in order to need Epi.

Now, mind you, these were hives that were not just localized due to contact (systemic -- trunk, inside elbows and back of knees, face around mouth) -- this was recent contact that became ingestion and was systemic hives for the child with the lifelong history of severe reactions.  Had I been the PIC (parent in charge) at the time, I would have Epi'd-and-911'd.  The child and PIC chose route of Benadryl with wait-and-see -- which is against most of what we've been told to do previously by this and other allergists.

I'm weary of the mixed messages and the "rules" that seem to change with the tides.

Weary.

And more importantly, confused.  Even after all these years.

Sorry, veering off topic . . . .

AND, AND, AND -- he reminded us to use double dose Benadryl for this kid (he's man-sized) AND "two tablets" . . . um, we have ALWAYS been told by other allergists and ped's to use LIQUID Benadryl for the speed of absorption.


This is a very well-regarded allergist. 

Maybe, Please don't quote.

But my head is spinning after the last apt and some things I've been thinking about the appt.

And he seems to be insinuating that DS's allergy situation is "getting better" just because we've not had a massive reaction in so long . . . but, really, that is directly caused by the care and LOW RISK lifestyle we've had so far as LTFA.

*sigh*

We do have new patient appts late this year with Dr. Wood.


I will get the school paperwork back from allergist next week -- not sure how things will read so far as treatment directives and the forms.

Crap-a-loo.

[hezzier]

Can you fill out paperwork as it was last year and have your regular doc sign off on it?  The forms just have to signed by a doc not an allergist.

Since we thought we'd be moving, I was too late for an allergist appt before school starts so I'm just taking everything into our family doc for signatures and prescriptions.

[twinturbo]

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.

FWIW with the first barley reaction even with "only hives" the attending pediatric physician in the ER told me it was time to use epinephrine even though I was scared to do it on a 7 month old. Through pictures and reports the ped and allergist agreed. The hives were so numerous they were on top of one another and started to converge with some overall swelling.

My youngest does get systemic hives from temperature change plus heinous contact dermatitis that looks like hives on his trunk, out of those 3 times I did not use epinephrine. But I'll know the moment when it comes and I will use it for progressive reactions that are going anaphylactic like I have on his older brother.

[Gray]

http://www.aaaai.org/ask-the-expert/Hives-and-indication-for-the-administration-of-epi.aspx

the issue you present is perhaps one of the most contentious in our subspecialty.

it becomes quite clear that, for example, when hives occur in a child who is known to be allergic to peanut after the ingestion of peanut, epinephrine is indicated.

[SilverLining]

I wonder if the reason the doc has changed opinion is because of age of child.  I would treat myself differently then a food allergic small child (if I had one).  your child is more able to vocally tell you if symptoms develop.

(I'm not defending that opinion.  Just suggesting it might be part of what he's thinking.)

[CMdeux]

It's also possible that-- as FA kids age into being adults-- they tend, on average, to have fewer cutaneous symptoms with anything but contact.  I know that many of us here have found that to be anecdotally the case; the hives come late, if they come at all, even in kids who used to very reliably mount cutaneous symptoms like a neon sign that said "Epi NOW, please, as this is an allergic reaction in progress."

Ergo, contact reactions seldom being indicative of impending or in progress anaphylaxis... wait-and-see is a lot more defensible than it is for swelling anywhere that might indicate airway compromise in the immediate future.

[yelloww]

That's or plan. Hives only isn't an Epi situation for us until it has a second thing involved. Even if it is a decent amount of hives in multiple places.

We just use liquid Benadryl for hives only.

Now to be fair, when ds gets hives it is rarely related to food. It is either a viral thing or environmental allergies. He randomly had hives about 10 days ago. They were on his arm and spread to his neck. It was likely not related to food at all because he hasn't eaten anything in hours. I questioned him 100 different ways to make sure it was just hives and I didn't observe him having any distress other than seeing the hives. So I dosed him up with Benadryl and the hives didn't return.

If I Epi'd him every time he had one symptom (his main one is itchy tongue, but not an itchy throat) Wed be using them once a month. He has too many EA's as additional variables for us to Epi with just one minor symptom.

[yelloww]

And this afternoon ds was licked by a dog on the mouth (he's with gram today) at a party. Itchy tongue from it. This isn't his first reaction to dog slobber. He got Benadryl and they are keeping an eye on things, but there wasn't a second symptom. Just the ick factor of it all.

[ajasfolks2]

Thanks, all.

It's the varying approaches so far as Benadryl and hives -- yes or no -- controls or masks -- what the hell?

Epi or no?

Inconvenience of 911 and ambulance ride or not?

These are the questions that never seem to go away.

Damn-a-loo.

[ajasfolks2]

Tucking this link here as I've not time to read and review at moment . . .

"When should adrenaline be given and by whom" from
Pediatric Allergy and Immunology
http://onlinelibrary.wiley.com/doi/10.1111/pai.12033/pdf

And I'm sure I've goofed up how to cite that -- up to eyeballs in another project and brain is fried!

[ajasfolks2]

Putting this link here.

Tragic Loss of Sacramento Teen Reveals Flaws in Anaphylaxis Guidelines

by Dr. Mark Greenwald

http://epicentermedical.com/tragic-loss-of-sacramento-teen-reveals-flaws-in-anaphylaxis-guidelines/

[ajasfolks2]

One more as relates to epinephrine use and reax protocol:

by Anne F. Russell, BSN

http://www.asthmaallergieschildren.com/2012/12/09/food-allergies-prescribed-injectable-epinephrine-know-practice-carry-use/

[Macabre]

Oh I like Anne Russell. We interact a lot with her on twitter.

[twinturbo]

But when given multiple tools and personalized, research-based patient education and support, families coping with food allergy and risk for anaphylaxis can conquer fears and thrive!

Dear medical professionals: Stop the spin. 

[ajasfolks2]

twinturbo,

elaborate please?

(need mas café . . . )