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Discussion Boards => Reactions & Stories => Topic started by: ctmartin on June 24, 2018, 11:59:39 AM

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Title: ANA Reaction Abroad ... Surviving MY Unthinkable!
Post by: ctmartin on June 24, 2018, 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.

Title: Re: ANA Reaction Abroad ... Surviving MY Unthinkable!
Post by: rebekahc on June 24, 2018, 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:
Title: Re: ANA Reaction Abroad ... Surviving MY Unthinkable!
Post by: GoingNuts on June 24, 2018, 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.
Title: Re: ANA Reaction Abroad ... Surviving MY Unthinkable!
Post by: my3guys on June 24, 2018, 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.
Title: Re: ANA Reaction Abroad ... Surviving MY Unthinkable!
Post by: PurpleCat on June 24, 2018, 05:34:36 PM
 :grouphug:

Wow!  So glad the reaction ended well.  Sorry this happened to her and all of you.   :grouphug:
Title: Re: ANA Reaction Abroad ... Surviving MY Unthinkable!
Post by: spacecanada on June 24, 2018, 05:56:45 PM
Oh wow, I am relieved that she is ok.
Title: Re: ANA Reaction Abroad ... Surviving MY Unthinkable!
Post by: ctmartin on June 25, 2018, 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.
Title: Re: ANA Reaction Abroad ... Surviving MY Unthinkable!
Post by: Ciel on June 25, 2018, 11:56:20 AM
I am so thankful that your dd is okay now. She sounds like a lovely young lady who seems determined to make the most of her life. I wish she were free of these obstacles and you were free of the worry and stress you carry.

Iím so sorry ctmartin, for all of it; the trauma, the shadow over your memories of an otherwise fantastic experience, and the pain that comes with betrayal by those you have trusted. :grouphug:
Title: Re: ANA Reaction Abroad ... Surviving MY Unthinkable!
Post by: GoingNuts on June 25, 2018, 05:01:56 PM
Wow, his reaction, or lack thereof, is absolutely disgraceful.  I'm so sorry for that, on top of everything else.  :disappointed: :grouphug:
Title: Re: ANA Reaction Abroad ... Surviving MY Unthinkable!
Post by: Macabre on June 27, 2018, 11:32:27 PM
Oh no!  Wow. Iím glad sheís okay, but that sounds awful.

:console:


Which gelateria in Rome, if you donít mind my asking?
Title: Re: ANA Reaction Abroad ... Surviving MY Unthinkable!
Post by: ctmartin on June 28, 2018, 12:37:52 PM

San Crispino!
Title: Re: ANA Reaction Abroad ... Surviving MY Unthinkable!
Post by: PurpleCat on June 28, 2018, 05:57:23 PM
Not to excuse his lack of communication, but I do suggest he is possibly concerned with a potential lawsuit.  He might not know what to say due to that.  If I remember correctly, a restaurant was recently held responsible for anaphylaxis in England?  Sketchy memory.

I remember a rep from a manufacturer being crushed that my DD had anaphylaxis to one of their products that had been previously safe and he was the original person who told me it was safe.  He spoke to me off the record as he had to be careful and not speak for the company he worked for.

I hope all of you heal in a positive way.  The aftermath is hard too.  How is your daughter doing?
Title: Re: ANA Reaction Abroad ... Surviving MY Unthinkable!
Post by: ctmartin on June 28, 2018, 10:01:49 PM

I agree, Purple ... it is just so hard for me to fathom his behavior, given our history together.  Suing him would have never entered my mind (not that I am seriously thinking it now, but I can fantasize, right?) if he had just acted more caring and compassionately.

My daughter is doing OK ... thank you for asking!  We are back in our comfort zone, and I think we never really realized how "comforting" our comfort zone was until we actually left.  Granted, we have done a lot of domestic travel in her lifetime, but even trips to the grocery store were stressful abroad.  I can't tell you how many times I would read labels ... in the grocery store, when we were home, and when we were going to consume. 

At one point in the trip, I went to buy some bus tickets, and hubby and two daughters went to the park to have a snack.  I did not know that they were going to eat without me, so when I came back and they were already eating I was a bit upset.  I checked the ingredients in the yogurt again while she was eating it (usually a very safe choice for us), and in my haste did not realize that my phone had autocorrected "nocciolo" (pit) to "nocciolina,"  which is another word for peanut in Italian ... of all things! Gave us both a mini heartattack!! (and this was before her reaction).

As I mentioned, the last few days of our trip were just horrible having to eat out, but we haven't eaten out since we have been home ... two weeks now ... and won't for a while.  She has complained about some leg pain at the 2nd injection site, and I must admit, I was not as gentle.  Also she has complained about dizziness as well, and I have read, both here and elsewhere, that that can follow an episode of ana.  However, she ALSO got her first period while we were in London (OMG!) and so I know that she is just teeming with hormones and that very well could be a reason for her dizziness.

As I said, we are both excited to travel again, and I don't think this episode will hold us back from that.  I will say that I was rather surprised when she came to me today and told me how much it upsets her that when she thinks about the trip, it is hard to separate the good times from this experience.  :'(  All I can say is how thankful we are that things turned out the way they did ... not everyone is as lucky.
Title: Re: ANA Reaction Abroad ... Surviving MY Unthinkable!
Post by: GoingNuts on June 29, 2018, 07:18:23 AM
 :grouphug: to you and DD. 

And getting her first period abroad?  Well, for sure she'll never forget it!
Title: Re: ANA Reaction Abroad ... Surviving MY Unthinkable!
Post by: PurpleCat on June 29, 2018, 06:08:33 PM
 :grouphug:

So glad she is talking about her feelings with you.  UGH to getting her period!  Poor kiddo.  With time, the memories of the fun you had just might overtake the stress and anxiety of her reaction.
Title: Re: ANA Reaction Abroad ... Surviving MY Unthinkable!
Post by: SilverLining on July 02, 2018, 02:21:57 PM
I am so sorry about her reaction. Relieved she is fine.

It may be that he is afraid of a law suit, but imo that is no reason to be completely rude about it. Did he call to ask how DD was after she went to hospital?
Title: Re: ANA Reaction Abroad ... Surviving MY Unthinkable!
Post by: ctmartin on July 02, 2018, 10:48:13 PM

Yes, Silver, he did text me the morning after.  I think my big problem is how complacent he was about the whole thing ... even before the reaction and also DURING (when he was trying to tell me that I was just being a neurotic mom!  You think at that point he would have though, "Hmmm ... did I even check these ingredients?  I better do that NOW!").  Also, he was not transparent at all in the aftermath, and we were really freaked out because we figured he had already checked everything and perhaps she had developed a new allergy.  It took me pushing and pushing before I got him to (somewhat) admit that it "could have been the bread and the ccinque cereali flour!"

OMG ... I could KILL him!  Kill!!  These recent fatalities are really tugging at my heartstrings and I am in a really bad place right now, even though I should just be grateful that she is OK.  It's going to take a lot of work for me to move beyond the "what if" that keeps appearing in my nightmares and let go of this.
Title: Re: ANA Reaction Abroad ... Surviving MY Unthinkable!
Post by: GoingNuts on July 03, 2018, 06:00:01 AM
I totally get that, CT.   :console: :grouphug:
Title: Re: ANA Reaction Abroad ... Surviving MY Unthinkable!
Post by: Ciel on July 03, 2018, 10:57:12 AM
Iím so sorry, ctm. Nightmares are horrible places to linger. I hope they fade soon so you can begin to find some peace with the events of that day.  :heart:
Title: Re: ANA Reaction Abroad ... Surviving MY Unthinkable!
Post by: PurpleCat on July 04, 2018, 09:37:14 AM
 :grouphug:
Title: Re: ANA Reaction Abroad ... Surviving MY Unthinkable!
Post by: tigerlily on July 09, 2018, 09:09:54 PM
 :grouphug:

So sorry for your experience, so sorry that it was from a friend. Glad your daughter is okay.
Title: Re: ANA Reaction Abroad ... Surviving MY Unthinkable!
Post by: ctmartin on July 22, 2018, 03:09:22 PM

Hi, Everyone ... I just wanted to thank you all for your kindness and support.  To all those who responded to my post, and even to those who did not respond but simply took the time to read about our experience ... I appreciate you!  This has always been my "Go-To" spot when I need answers, or even simply to vent.  I try to give support and feedback of my own when I can, and I hope that I have helped at least some of you.

Anyway ... we are in full recovery mode, and I feel it's going pretty well.  We still haven't eaten out yet, but I'm sure that time will come.  Until then, things are slowly returning to normal.  HOWEVER ... I feel there is one more step to my recovery, and I am not sure whether it is worth the effort or not.

I would like to write an honest review ... obviously not of the food from the restaurant, which we did not even get to enjoy anyway ... but of their attitude toward food allergies (obviously they are not very educated and/or as careful as they purport to be).  That's the thing ... given that the owner has STILL failed to respond, I have no idea really what happened or how it happened ... I only know that my daughter had an ANA reaction to sesame in the bread, which is what he has reluctantly admitted.

I have done some research on-line at tripadvisor and other sights and have seen other such reviews ... I feel like I owe it to the food allergy community, but I do not want it to come off as vindictive, even though that is what I am sure it is going to seem like to him.  That is why my daughter does not want me to write anything ... she who looked at me with pleading eyes trying to talk me out of even TELLING him what had happened as it was happening ... AS IF! ... for fear of ruining my friendship with him.

So, I wonder ... would it be enough of a benefit for the food allergy community for me to write a review of warning, or would people just see all of the great reviews (of which he has plenty, which is what would make writing this so hard), and disregard my warning.  What do you all think?

Thanks for being here for us ;)