CM, that post was amazing. 

Just wonderful.

Thank you. I will keep that in mind and watch like a hawk! I am not going to leave him with anyone other than at his school until we have an epipen on hand and see an allergist. My twin sister is the only one who will keep him after that. They daycare is petrified and not taking any risks.
I was talking to a coworker yesterday and her response to everything going on was, "Oh no. You have to live in that world now." That pretty well sums up how I feel--like I have somehow crossed over into an alternate reality and no one else quite sees it yet.

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. 

Tomato sauce could be the culprit - already sensitive skin reacting to acid.

Having said that, over the years Little Caesars has been known for mystery reactions and no one can seem to figure why.  As much as I love the pizza for being cheap and handy (given that I pay almost $10 for a pizza the size of Totinos that is safe for son allergic to wheat, rye, barley and egg), it is no longer worth it to me. 

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?

After a reaction for a while after it's possible to react to stuff you normally eat. Having said that keep a log of what he eats and if there's any noticeable reaction. Think back to the shrimp if there was anything it was cooked with or in. You're watching contamination so you'd know if it was a shared dish sponge, cooking equipment.

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.

Quote from: DysonsMom on January 10, 2014, 01:15:34 PM
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.

Based on my experiences, I would suggest taking him to a pulmonologist for a formal evaluation to see if he has asthma.  Needing to be on oral steroids so many times is generally not a good thing. 

It is possible, although I can't say for sure, that severe symptoms might be reduced by adding a daily controller med like Pulmicort or Flovent.  If it is asthma, you really want to get that airway inflammation under control.

When my dd was very young, her ped didn't think that she needed to see a pulmo ... that is, until she ended up hospitalized.

Quote from: DysonsMom on January 10, 2014, 01:15:34 PM
How would asthma be a game-changer? I am supposing it would increase the likelihood that his lungs would become involved?

People with asthma are at higher risk of having severe food allergy reactions.  Plus it adds a layer of complexity in that lung symptoms require judgment calls as to whether symptoms are from asthma and/or food allergy.  I wouldn't worry too much about this unless your ds is diagnosed with asthma.

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?

One last base to cover just to be sure. Does child have any history of asthma? I'm not saying expect it but a history of asthma is a bit of a gamechanger.

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.

Don't worry about overloading me with links and information. I am going through and reading them all now.
I really appreciate the support. I am going to call an allergist recommended by a coworker today and get him set up with an appointment. And I am going to go through this thread with my coworker and teenage son, so we are all on the same page.
Until an allergist tells me differently, I will use the Epi if his airway is involved, even if it is just lip swelling. I would rather have him safe and have a huge ER bill than jeopardize his life. I never thought Russian roulette was very wise.

Quote from: LinksEtc on January 10, 2014, 09:47:57 AM

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. 

Quote from: DysonsMom on January 10, 2014, 09:00:29 AM
I have a couple of relatives who think I may be over reacting. (The benedryl worked just fine. Don't panic. Don't over react. He doesn't eat much seafood, anyway. He probably would have been fine eating the Ramen noodles--he has had them before. What is the likelyhood he would react to cross contamination?)

I don't know if he would react to CC. I don't know how severe the allergy might be. I just know I am taking anything that could possibly kill my baby VERY seriously.

Relatives often feel that way, but I'd try to tune them out for now 

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As far as cross-contamination & regular label reading, these are the last links I'm going to give you today (sometimes I have to hold myself back from providing too many links  ):


"FREQUENTLY ASKED QUESTIONS ABOUT THE FOOD ALLERGEN LABELING AND CONSUMER PROTECTION ACT OF 2004 (FALCPA)"
http://www.kidswithfoodallergies.org/resourcespre.php?id=50&title=food_allergen_labeling_law


"Cross Contamination of Foods with Allergenic Ingredients"
http://www.kidswithfoodallergies.org/resourcespre.php?id=7


http://home.allergicchild.com/cross-contamination/


"Can consumers trust allergen advisory labels on food products?"
http://www.aaaai.org/global/latest-research-summaries/Current-JACI-Research/Can-consumers-trust-allergen-advisory-labels-on-fo.aspx

Quotehighlight the need for allergic customers to avoid products with advisory labels and to have some concern for products that have no advisory labels, particularly from small companies within categories of higher risk products.

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Take everything step by step ... Don't overwhelm yourself ... Getting epinephrine, an allergy plan, an allergist, & becoming familiar with label reading is where I would start.  It's normal for there to be some stress & anxiety when 1st diagnosed  .

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.