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Welcome > Welcome and Introduce Yourself

What would you tell someone new to LTFA?

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right.  Don't let others make you feel bad or feel pressured or that you are doing the wrong thing for your child ("oh, come on; one little bite surely won't hurt!").  They just don't know what we (as FA parents or as FA individuals) are going through.  And for some of those people, I don't have enough hot air to convince them otherwise.

Provide for your own child or provide for the whole class, whatever works. 

I'd recommend getting a good allergist.

Make sure to get a "food allergy action plan" that is signed by your physician (preferably an allergist).
I give one copy to the school and make sure whoever is with my dd (that includes myself) has a copy along with her EpiPens.  Here is an example of such a plan:

Sometimes it can be hard for people to use epinephrine.  Try to mentally prepare yourself before an emergency happens.  Delaying the use of epinephrine can have tragic consequences.
Here is an article that I like:

Consider getting a MedicAlert bracelet.

In the USA, if you have an allergen that is not one of the "Top 8", food labels are extremely tricky and your allergen does not have to be clearly labeled.  My personal opinion is that some of the major allergy organizations do not do a good job explaining non-top8 labeling regulations.

Sometimes you have to stand up to people to protect the allergic individual - you may take some abuse - letting off some steam here among those who understand can help.

This is just my personal opinion, but for those with both asthma & food allergy, I think it's important to be familiar with the issues discussed in this thread.  I'm not advocating any specific course of action for individuals except that they should discuss any questions/concerns about these issues with their doctor(s).
Standard Protocol for "Asthma Action Plans"

These sites have some helpful info:
AAAAI - Choosing Wisely

More helpful info:
Food Allergies: Facts, Myths, and Pseudoscience

Ask questions here.  There are many knowledgeable people here. 

I think this is a great article for newbies to read:
Dr. Robert Wood - "My Food Allergy Reactions"

This is from the perspective of adult-onset FA, though I've had environmental allergies and asthma since childhood.

This does not necessarily hold true for everyone, or even a majority, but I think that it is important to mention:

If you are in the subset of very sensitive individuals, sometimes things may happen that seem so ridiculous that you don't even believe them as it is happening.  While you want to be sure not to just quickly attribute everything to a reaction, you also do not want to dismiss it just because it seems unlikely to be at first.

I did not think that I was as sensitive as I am now until I was in an ambulance because a preschooler wiped allergen on my skin. 

Also, if you happen to be one of the lucky folks with MFA, it is likely that you will be more reactive to some things than others.  It is VERY difficult for people who do not life the allergy lifestyle to understand this, so be careful what you tell them.

Even with MFA, you can make tons of delicious food.  There are few things that I cannot make a safe version of, and I have a pretty big list.  It just takes research and experimentation.  I make an 'apple' pie that tastes so much like the real thing it scares me.  Family members request it over pie made with real apples.

I think that for me, what it boils down to is just two basic questions that I always ask myself-- about ANY decision:

1.  What if that doesn't work?   What would I do if that failed? (this is the "back-up plan" question)

2.  What if I'm (S/He's, They're) wrong?  (this is the one that reminds me what I'm risking)

Any decision has to pass the sniff test on those two items.  We don't DO things, by and large, where the answers are unacceptable.

My reactions have always been mild  See questions 1 and 2.  In that order.

But so-and-so assures me that it is safe and that I should try it..  See questions 2 and 1.  In that order.

Backpacking in the wilderness with a group of friends...  Hmmm... well, question one suggests that a "treatment plan" under those conditions is a joke.   So if prevention/avoidance were to fail...    how much do I trust my companions to get it as well as I do?  Completely-completely?  Or "enough so that they don't usually pose any risk to me?"

A trans-Atlantic flight?  {gulp}  Okay, no treatment plan is really worth discussing HERE, either-- so the environmental controls must be sufficient to make a reaction nearly impossible.  Not worth eating or drinking anything that the airline provides, certainly.  MAYBE not even worth it at all, depending on the individual... hard to say.

I find these are my fall back because they keep me centered on what HAS to be prioritized-- A.  prevention through avoidance, and B. preparedness for treating a catastrophic reaction.

Avoidance will fail.  It just will.  Nobody is perfect at avoidance.  That said, you must be prepared for the "next one" to be the "big" one, because you just don't know whether it will be or not.  That's the nature of an accident-- it's not planned, and therefore it's also a bit unpredictable in scale. 

1. Relative risks, ie. people with asthma are more likely to have a fatal reaction than non-asthmatic people, nut allergies are more likely to be fatal than, say, milk allergy. I don't know why no one wants to talk about these things, but I would have found it extremely comforting to know the real deal about how deaths happen in the real world.

2. Real anecdotes. I was very glad to know a primary health care provider who told me about her friend - also a patient of hers - who had coded on her first ever milk allergy reaction. She had drunk milk right up to that first reaction. I never would have realized as clearly that reactions can be sudden if she had not made a point of it to me (whilst trying to convince me that my next reaction could be worse).

3. I would have liked to hear real anecdotes about how people survived very serious reactions requiring hospitalization that don't end with the person being able to eat at any restaurant they want as long as they wave their allergy avoidance card at the waitress. I love humankind but those anecdotes make me want to throw things. And they are EVERYWHERE. I just wanted to hear about people who were more like me who frequently had reactions from tiny amounts of cross-contamination and had to learn to live with that.

4. I needed to know that just because a reaction resolves quickly and does not involve hives does not mean it wasn't "real". I practiced strict avoidance because I hated the feeling of a reaction, but I never really thought my reactions were dangerous since they were usually over quickly and didn't have what I thought of as "classic symptoms". Now I know better.

5.  In that vein, I wish someone had told me about adrenaline and how it works. Now I realize that my body was producing its own adrenaline save when I had my reactions but that was fuzzy to me before. For a long time, I did not understand that my throat closing was SERIOUS and REAL but my body OVERCAME the reaction by mobilizing massive amounts of the same hormone synthesized for the auto-injector. And if my body could one day just not mobilize enough quickly enough, that is when I would be up a serious creek. I needed to be told that I did not not die when my throat swelled all the way shut and then opened quickly NOT because it was "only a mild and short reaction" but that I did not die from lack of air because my body had pumped out massive amounts of adrenaline to mitigate the reaction.

5. I also would have really liked to know that reactions can look very different. One time, you can have hives, the next your throat can swell shut. Another time you can nearly pass out. Or differing combinations of symptoms can happen. Now I see this clearly in the literature, but I missed it for a long time. The anaphylaxis chart helps a lot. I thought all the reactions had to look the same as each other to be "real".

6. Carry two Epi's. I had never heard this until I came on this board. I frequently went into the remote backwoods with only one. Oh, and no Benadryl, either. Until I came here I had no idea that a lot of food allergic people carry Benadryl.

7. I wish someone had told me that I might not meet anyone with allergies as sensitive as mine and that other allergic people - even children - would illogically enrage me with their superhuman abilities to eat at any restaurant or any packaged food that was not actually their allergen. And that even magazines and bloggers would continuously give them impression that not trusting was not living.

8. Conversely, I wish someone had told me that I seriously needed to learn to not be resentful and angry at how annoyed this disparity made me feel  - frequently like there was something wrong with how I handled things. After all, I had not been hospitalized. Who was I to be so precious? That kind of thinking is bad and it was only some kind of miracle that we had an Epi nearby when the big one struck.


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