What would you tell someone new to LTFA?

[AdminCM]

Let's hear it for our FAS community!!  I know that we have a wealth of very hard-won knowledge and resources tucked away on favorites and bookmarks...

so let's set up a clearinghouse thread for this stuff!

What would you tell-- well, you-- when you were brand new to things?

What would you WANT someone to have told YOU?

[GingerPye]

oh boy.  Where do I start --

That I was going to be able to feed my allergic child, allergic to many foods at first --- and that I'd figure out how to feed that child safely and well.  That things do get easier, although it took me a while.  The only resource I had was FAAN back when it was FAN, and since I didn't have computer access, I signed up for their newsletter and ordered their cookbook.

Also, info that would have been really helpful --- that I would find my child's allergens in really strange foods ... where I'd never expect to find it.  Label-reading is so important.  Asking questions in spite of the embarrassment factor is soooo important.

That doctors don't nec know all about food allergies, and some doctors know precious little.  Learned that one from more than one experience.  That it is okay to go find the doctor who does know about food allergies and can test and can interpret those test results and can do food challenges, to get to what is a true allergy and what is a false positive.

I would have liked to have the anaphylaxis grading chart back then, as well -- what a helpful tool.

There are so many online resources now; I wish I'd had them back when my daughter was first diagnosed. 

so many things I've learned -- I'll have to give it some more thought.

[YouKnowWho]

Allergen statements are not universal.  Some companies are great at labeling (nice bold print or an easy label underneath that clearly notes contains statements), others will make you go blind.  May contain and shared line statements are entirely voluntary so don't assume if there isn't a label, that it's safe.

It is always a good idea to double check a product, even better if you have a second set of eyes to look it over.  And remember every time - products change.

When you are starting out - do your best to grocery shop alone.  I personally find my smart phone to be invaluable for shopping so that I can look up products in regards to this board, the Celiac board (DS1 is allergic to wheat, rye and barley) and the individual companies page for their FAQ. 

It is up to you if you want to remove all of the allergenic products from your home.  Personally we have chosen not to do so because DS1's allergens are rather limiting enough though we have had to adapt our cooking practices.  For us, we find colored labels on products when they were younger were helpful (we use garage sale dots and each child knows which color is safe for them).  Others feel better removing the allergen from the home so their child feels safe or they are affected by contact/inhalant reactions.

The School thread is invaluable as you learn to navigate the world of schools from how to deal with birthday treats, snacks, lunches, inclusive, lessons, etc. 

It is so easy to get overwhelmed at first and I know it sounds corny, but it does get better.  It certainly has it's ups and downs.  When you are down, you dial back your comfort zone.  When it's up, it is smooth sailing.

[yelloww]

Your gut is always right.

The best advocate for your child is YOU and sometimes you will know more about FA's than a doctor does depending on their specialty.

If you don't feel the person you are seeing for medical care is the best around, then dump them and find the next one.

Your child can still have a really great life and do things that all of the other kids can do (except of course eat certain foods). My child has traveled with us out of the country. He's also been to sleepover camp by himself many times. It takes more work on your part to make these things happen, but they are NOT impossible.

And lastly, no two families have the same experiences. Not all allergy parents agree on how to address allergies outside of their home. That's ok. Do what is best for YOUR child and YOUR family.

Don't be surprised if toxic family members now have to be excluded from your close circle because they don't believe in FA's and do something harmful or hazardous to your child.  It is an unfortunate reality, but your child's safety comes first.

In just about a month, I will have been on this journey for 13 years.  It gets better. 

[becca]

Read labels, call manufacturers, learn about cross contamination risks. 

Do not be pressured to have your child eat communal foods, despite all ressurances that others can make it safe.  This is highly individual, but caused me the greatest stress in our preschool years.  In hindsight, rather than give safe snack lists and help with every project and always being room mother, simple provide all of your child's own food from home.  Period.  No flexibility, until older ages where you child is aware and you can teach them to read labels and ask questions on their own. 

[GingerPye]

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. 

[LinksEtc]

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:
http://www.foodallergy.org/document.doc?id=234


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


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:
http://www.kidswithfoodallergies.org/resourcesnew.php
&
https://www.foodallergy.org
&
AAAAI - Choosing Wisely
&
http://allergicliving.com
&
http://www.foodallergyawareness.org


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"
http://www.drrobertwood.com/myanaphylaxis.shtml

[Janelle205]

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.

[CMdeux]

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. 

[jschwab]

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.

[CMdeux]

It isn't that your life will Never Again Have _______ in it.

(well, unless that blank includes your actual allergen, I mean...)

It's that _____ is going to be rare.  A treat.  On second thought, maybe this is actually a good thing. 

I call that one of the authentic hidden benefits of food allergy.  Not taking the mundane but thoughtful things for granted.  Experiencing joy in everyday things.

That's actually kind of priceless.   

For an example of what I mean by that:  we have found ONE restaurant (ever) where it was safe for my DD to order more or less from the menu as it stands... and to order ICE CREAM and MILKSHAKES from that menu, even.  I never lose that sense of wonder and joy that I can BUY MY TEENAGED DAUGHTER A MILKSHAKE.

Ask yourself how many other 14yo in the world wear a smile that could light up Anchorage just because Mom or Dad took her for a milkshake. 

My neighbor sometimes gives me fish-- halibut that he himself has caught.  I have a shellfish allergy, so in spite of living in a coastal region, most fish is completely off-limits to me, and I love fish.  I never ever take it for granted, and I savor every bite.   

When someone says "Oh, well of COURSE we'll tell everyone not to bring {allergen} to our group activity..."  you know that they value you and want you to feel comfortable and included. 

This is a gift.   

[Linden]

Watch out for look alike packaging from manufacturers. They often make several products with nearly identical packaging but different lists of allergens. For example, I've seen Better than Boullion Chicken Base contain milk when Better than Boullion Organic Chicken Base doesn't.  It is so easy to grab the wrong product off the shelves.

[spacecanada]

FARE's Food Allergy Field Guide:
http://www.foodallergy.org/document.doc?id=263

Kind of like Allergy 101 for the newly diagnosed, but also a good read to share with people close to you and/or people who don't get it.