CM, that post was amazing. 

Just wonderful.

but most of them have medical backgrounds (nurses and emt's), so they aren't going to intentionally "test" by exposing.

One certainly HOPES not.

But I'm here to tell you that in fifteen years, man, have I ever been SHOCKED by people that I know well so failing the Captain Obvious test on that one.

Unless you live it, truly "getting it" is a limited and fairly binary thing.

My family and I were talking about this the other day-- it seems to be a binary yes/no condition that can fail on either of two counts:

a) gets it emotionally-- that this is your reality-- and WANTS to understand and care for you/yours-- no questions asked.  Would NEVER challenge you about your allergy or your stated needs, but often still wants to include you and share with you.

b) gets it intellectually/cognitively and recognizes risks adequately-- understands cross contamination, brand specificity, shared lines, etc. etc. etc. and also understands-- TRULY understands-- that anaphylaxis can kill, and how.

I've found that most people in my life (about 90% of them) fail on some combination of the two things.  Usually, the overconfident ones are good on point a, but clueless with b.  They're the ones you should NOT trust, no matter how earnest and loving they are, no matter how many times you've explained things to them.  Problematically, they are often extremely frustrated that you won't accept their cooking.  They can't get it well enough.  The other kind tend to be where the medically/scientifically trained people fall.  Oh, they GET it all right.  Academically.  But they think that this is someone ELSE's problem.  Not your problem.  YOU, they think is over-reacting and probably just needs to be jolted out of your doom and gloom.  They'd be willing to help there, because they know better than you do.  Really, they'd be doing you a FAVOR to show you that you really are overly worried about being part of that group when you aren't... by, you know, demonstrating that the worst that could happen is SO minor...  Being scientifically/medically trained where you aren't, see.

That group gives me the willies.  Because they can give every sign that they are 150% trustworthy, even when they aren't.  They should know better (and they do-- as noted, with "those poor unfortunate people affected by this awful thing"); they just don't believe that YOU are in that group.  They may think that YOU are an attention-seeker, maybe even a helicopter mom sliding toward Munchausen in your bids for attention. 

Yes, I know this isn't so.  I'm a member of the "my family has believed that I might have a psychiatric disorder because of my child's FA's" club.  But I can assure you that those people ARE out there.  They are extremely dangerous.  Go with your gut-- if you don't trust someone that your brain says you SHOULD trust, there's usually a GOOD reason.  It may be in microexpressions of disbelief, etc. as you've talked to them or something like that.  Most of them have some kind of 'tell' that they aren't buying your particular narrative.   At that point, being MORE emphatic only makes them dig their heels in, and you're much better off just not entrusting the food allergy to that person until they come to you, sheepish and apologetic (or give another indication that they've had their Come to Jesus moment without YOU in an ambulance).

KWIM?

My DH calls this a "civilian misunderstanding" of sorts-- they can't get it because they don't live it. 

Nothing shared. The pizza came from Little Cesar's. The shrimp was cocktale shrimp straight from the package to a paper plate. I immediately got rid of anything that had touched the shrimp, washed his clothes, the counters, and took out the trash.

The welt on his face seems to be going down. It is no where near as bad as the other night. Maybe it was just a hyper reaction to something from his system still being hyped up?

I gave him some pizza a about 15 minutes ago--same stuff he has had a zillion times. Now he has a welt beside his mouth. I have an appointment to get the epipen with county health on Monday. I figured I would just give him stuff I know he can eat. But this throws a kink into things.
I gave him benedryl and he is still on prenisone, so I gave him the dose he was due for. I am going to watch him carefully and pray there is no more swelling.

I appreciate the caution regarding my friends and family, but most of them have medical backgrounds (nurses and emt's), so they aren't going to intentionally "test" by exposing. They know it can be life-threatening. We have a mutual friend allergic to shellfish who is alive because she happened to have her first reaction actually at the ambulance service.

They just don't think he will actually be exposed to shellfish if I don't feed him shrimp or crab. However, I have a gluten intolerance, so I am aware of how often cross-contamination can happen, even when being careful. That being said, I am certain milk or nut allergies would have a far more life-changing implications.

As for asthma, he has never been diagnosed with it. However, (I don't know if this is related or not), but we have not yet had a cold and flu season when he did not end up on steroids and breathing treatments for coughing. As a side note, my oldest son and myself have eczema and my identical twin had asthma, but has not had a flare in years.

How would asthma be a game-changer? I am supposing it would increase the likelihood that his lungs would become involved?

Man, I hate to say this but it has to be said my instincts are telling me to. Keep your cards close to your chest on this one with friends and family. There are some family members that believe it's made up, not so bad and that they are going to 'prove' it to you--by putting the child at risk. They are not evil just misguided. Beware the family member too eager to watch or feed your child.

This should ease up once you get everything in place for emergencies and find a groove. If it's only shrimp (and I don't say that lightly) then it may not have as much life altering social impact as peanut or milk would. You may not have to make as many life alterations with a more narrow category of food like crustaceans.

Bottom line is watch out for adults wanting to 'test' the child. Need to know basis. Nod your head and empathize, cite doctors orders, etc. Don't get into involved conversations with anyone. That will at least save you time and frustration.

Quote from: DysonsMom on January 10, 2014, 09:00:29 AM

First thing this morning, I gave some instructions to the daycare, including to call 911 if he starts having a reaction that includes 2 symptoms and call me for any hives or lip swelling.

Sometimes 1 symptom is enough to epi for ... for example, "LUNG" symptoms after ingesting the allergen is something many of us here have been told to epi for.

Yes-- it's important to know which symptoms are "life-threatening" or indicative of imminent/hard-to-see life-threatening responses.

SKIN symptoms, ironically, are the easiest to see, but the least dangerous type of allergic response.  Just like in first aid class-- remember your A B C's.

Airway-- anything that obstructs the airway is BAD, BAD, BAD, and can kill-- this includes swelling anywhere along or near that airway, particularly in young children, who have SMALL airways to start with.   So lip or mouth swelling is a LOT more serious than eye swelling, basically.

Breathing-- this is a tricky symptom in young children, but wheezing, coughing, or other signs of respiratory distress of ANY kind should be treated with epinephrine because they are IMMEDIATELY life-threatening.

Circulation-- this is, at least in my mind, the ULTIMATE bad news set of symptoms (could be because I've seen these relatively often in my DD).  The reason is that they are SO darned hard to pin down in kids when you're on the outside looking in.  Symptoms of shock are so hard to spot early.  Glassy eyes, dazed behavior, or unusual lethargy with pallor... all call for epinephrine if you have ANY reason to suspect an allergic reaction is in progress.

Basically, that's it.

Get to know this:

Anaphylaxis Grading Chart

Which is the plain-English version of the one originally published in a medical journal (the link is in the chart)-- I'd take that with you to your allergist and discuss previous history (the symptoms you saw) as well as what to do about each of the ones listed in the future. 

Understand that the "neurological" symptoms usually indicate cardiovascular involvement-- pay VERY close attention to those last three columns, as those symptoms can kill in just a few minutes, and there also seems to be a "tipping point" beyond which medical intervention (even epinephrine) is no kind of guarantee of anything.  I don't say that to scare you-- but to cement for you that your family MIGHT think that you're overreacting, so you need to KNOW that you are not. 

Most people will think you're overreacting. Include many medical professionals on that list. We can show you how to manage those social situations including medical professionals later but right now yes, your priority list looks right to me.

You have to keep in mind that allergic disease in this current generation of kids is unprecedented with regard to food allergy. I was in the group of disbelievers before it happened to my kids. I started believing.

Plan is in place. I'm assuming you're bringing your partner up to speed so you're both on the same page.