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Author Topic: ANA Reaction Abroad ... Surviving MY Unthinkable!  (Read 40 times)

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Offline ctmartin

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ANA Reaction Abroad ... Surviving MY Unthinkable!
« on: Yesterday at 11:59:39 AM »

We have only been home a little over a week, so I am still processing everything, but I thought I would share (some of) our story here with the hope that it helps someone and/or serves as an ever important reminder to those dealing with LTFA.

OK, first the GOOD, and there was much of that.  I started planning our first major trip abroad last fall, with an itinerary including London, Paris and Italy.  For reference, my daughter is allergic to peanuts and sesame, and we avoid tree nuts and shellfish.  I spent COUNTLESS hours researching everything from airlines, lodging (we did mostly Airbnbs, for access to kitchens, as we ate meals at home the majority of the time), grocery product vendors, and, of course, restaurants (all of this in addition to the "normal" things people research when embarking on such a trip!).

I must admit ... so much of the trip was easier than I thought.  The flights (BA/EasyJet ... 4 in total), grocery shopping abroad, and even some of the restaurants.  I compiled a list of a handful of safe restaurants, and we pretty much stuck to the list with little to no deviation and were VERY successful (beyond my wildest expectations ... my daughter enjoyed croissants and fresh pastries in France, an entire scratch made meal of traditional Umbrian cuisine in Orvieto, Italy, complete with
 3 different desserts, and gelato at TWO different places in Italy!).  This was only after many email exchanges with owners, as well as cross referencing each establishment with online research.  It may seem like a lot of work (it was!), but it was totally worth it!!

So you might be wondering where we tripped up, and this is where the reminder comes into play.  I have a longtime friend who lives and owns a restaurant in Rome.  He has been well aware of my daughter's allergies for years now, but especially in the months prior to our visit, when I messaged him several times lamenting about how hard it was to find safe restaurants in Italy that could accommodate her sesame allergy.  He stated that I "shouldn't worry too much,"  that "lots of places can deal with that," and finally, "failing all else, you can eat at my place every night."  Was I convinced?  You bet I was ... this was a friend of mine who has been in the restaurant business for several decades, and his English is impeccable, as he was educated in England.  Add to that his assurances, and I was completely sold.

That is why, when we sat down to dinner that night (after reminding him both the night before and again that night), I was fully confident we were in good hands.  When the bread came (and this is usually a no-no for us everywhere, but he assured us his was homemade and he was confident it was safe), I allowed her to eat it.  And it all went downhill from there.  For further reference, my daughter has had two ANA reactions in her 12 years (one was her initial reaction to peanuts, and one occurred at 6 years old when she had sesame in a pizza crust we had not realized had changed its ingredients ... we are VERY careful, take no chances, and we usually avoid eating out at home).

So, the lesson I learned is this: I will trust NO ONE, ever.  I will never take someone's word for it, without having them physically check the ingredients with the kitchen AT THE TIME we are eating, even if I think they have done so before.  This was no case of inadvertent cross contamination ... this bread CONTAINED sesame.  And, of course, we did not believe her when her reaction began ... how could it be?  At THIS restaurant of all restaurants?!

What happened next probably belongs in the "Reaction" thread, and I am not really even sure I am ready to write about it fully yet, as it was all so terrifying.  Suffice it to say, she received two auvi qs, an ambulance ride, observation in a Roman hospital, and Prednisone that *I* administered there (and had the forethought to demand our doctor prescribe to us before the trip).

My daughter is a free spirit, and she loves to travel.  Previous to this, our travel consisted of mostly domestic trips (with a visit to Montreal to test out dealing with a language barrier), but I saw her absolutely come alive during this trip, and I know it is only the first of many she will take.  She's going to have to learn to manage her allergies on her own, and the silver lining (as it always is in cases like this) is she is more aware of her body (as are we) and a little more confident in her ability to deal with a reaction.  We now joke that if we can handle summoning the ambulance and our time in the hospital, given the language barrier (I only know rudimentary Italian), anything that happens here at home will seem like child's play in comparison.  This happened at the tail end of our trip (only 4 days before we were to fly back home, and on my birthday, no less), and although it was, and is, heartbreaking to see her suffer such anxiety in its aftermath (we did not have access to kitchens the last couple of nights we were abroad, and thus were forced to eat out, which was completely terrifying to us all), I know this will not stop her from living her life as she wants, and I am so very proud of her.  Best wishes to all of us ... it's a tough road to travel.


Online rebekahc

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Re: ANA Reaction Abroad ... Surviving MY Unthinkable!
« Reply #1 on: Yesterday at 12:56:48 PM »
Wow, I don't even know what to say!  I'm so glad your DD is alright!! It's too bad a reaction put a damper on the end of such a wonderful trip.  :grouphug:
TX - USA
DS - peanut, tree nut, milk, eggs, corn, soy, several meds, many environmentals. Finally back on Xolair!
DD - mystery anaphylaxis, shellfish.
DH - banana/avocado, aspirin.  Asthma.
Me - peanut, tree nut, shellfish, banana/avocado/latex,  some meds.

Offline GoingNuts

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Re: ANA Reaction Abroad ... Surviving MY Unthinkable!
« Reply #2 on: Yesterday at 01:25:04 PM »
I had to hold my breath until the last sentence of your post. Thank heavens she is OK, but wow, what an experience.  Thank you for sharing it with us.
"Speak out against the madness" - David Crosby
N.E. US

Offline my3guys

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Re: ANA Reaction Abroad ... Surviving MY Unthinkable!
« Reply #3 on: Yesterday at 04:09:55 PM »
Wow! So glad it all ended well!!!! I feel your vacation reaction stress! Although I canít imagine adding a language barrier on top of it:( great job mom!!! Iím glad she enjoyed so much before then and am so sorry it happened.

Offline PurpleCat

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Re: ANA Reaction Abroad ... Surviving MY Unthinkable!
« Reply #4 on: Yesterday at 05:34:36 PM »
 :grouphug:

Wow!  So glad the reaction ended well.  Sorry this happened to her and all of you.   :grouphug:

Online spacecanada

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Re: ANA Reaction Abroad ... Surviving MY Unthinkable!
« Reply #5 on: Yesterday at 05:56:45 PM »
Oh wow, I am relieved that she is ok.
anaphylaxis to tree nuts, peanuts, potato, and wheat

Offline ctmartin

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Re: ANA Reaction Abroad ... Surviving MY Unthinkable!
« Reply #6 on: Today at 10:16:27 AM »

Thank you, everyone, for your kind words.  Yes, it definitely had a negative impact on the memories we had created on our trip.  Had it not occurred, the trip would have gone off without a hitch.  Of course I have been beating myself up over so much and have had a lot of sadness that such a brush with mortality always brings.  Then there is the part where we did not believe she was reacting ... makes me sick to my stomach to think about.  And finally, the loss of a friendship ... he has been VERY unresponsive to us and not very apologetic.  This wasn't a close friend of mine, but someone in which circumstance had brought us together many times over the past 27 years and we just decided to keep in touch.  Previously, I would have considered him a friend, but now I wonder if that is what we were?  I just can't believe he allowed it to happen, and not only has he not apologized, he hasn't really come clean definitively (he says he "thinks" it was the bread that contained "cinque cereali" ... i KNOW it was ... I was warned by many restaurants of the use of cinque cereali in their bread and pizza dough).  It's almost as if he is afraid to even communicate with me because he thinks perhaps I am going to sue him?  I have no idea, but needless to say, I am mourning that loss as well.