urgent advice: fed allergen at an event? WWYD?

[katilac]

 

But I also feel that the event host failed us. She knew DD was anaphylactic!

 

Main question: do I deserve a refund? Full refund? Partial refund? Nothing? Was it all my fault?

 

 

I think it depends on what exactly can be pinned down, both on what you were told/promised and what actually occurred. 

 

If what they promised you was food that was wheat free and gluten free, and their explanation of what was served is correct, then I would not feel that they had failed you, because they did as promised: They served food that was sold as wheat and gluten free, and separated and marked the items that were not.  

 

That doesn't mean I don't think you should ask for a refund, it just means I don't necessarily think they failed you, or that it was their fault (based on info uncovered so far). 

 

I would very politely inform them that dd was too sick to return for the second day, and would they please consider a refund in light of the  unfortunate circumstances beyond your control? 

 

You can figure out your next step based on their reply. 

 

Always start out positive and polite. 

[Grover]

I'm betting she only looked for gluten, not wheat. That's probably what happened. 

I'd go with this - we've learnt the hard way that gluten free doesn not always mean wheat free and it is easy to get tricked by the "gluten free" label and not look further if you don't understand. 

 

I hope your daughter feels better quickly.

[Katy]

I've figured out that with a wheat allergy, I cannot trust someone with celiac to deliver actually gluten-free food unless they have extremely severe reactions.  If they just get a stomach ache and still drink coffee at Starbucks and don't care that their chocolates say made in a facility with wheat, or they do not notice that the "gluten free" crackers they bought were also made in a facility with wheat, and ignore that it is noted on the package that people with an actual wheat allergy should never eat this product because it is contaminated and will kill you.

 

Having said that, it is possible that she's developed a different allergy, or that perhaps she has histamine intolerance and the other foods that were safe were high in histamines and she doesn't have the ability to break that much down.

 

My internet is out right now and I'm using a cell phone to connect so I won't have predictable access, but if you have questions about that PM me.

[gingersmom]

N/m

Edited October 17, 2016 by gingersmom

[ktgrok]

I'd ask for the brand of everything, and explain you need the labels, photos of labels, or at least the brand so you can look up the label, to give to her allergist in case there is a new allergy. So they know what to test. 

[Spryte]

I keep think of your DD, OP, and hoping she's ok. I hope you'll update us.

[mamiof5]

Just saw this. Hope your dd is doing much better! Sorry she got so sick :(

[Mrs_JWM]

Pre-sliced cheese could have gluten on it. Don't they coat it to prevent the slices from sticking together?

They often use cellulose, but I haven't heard that they use gluten.

 

Sent from my XT1049 using Tapatalk

[Junie]

I hoe that your dd is feeling better and that you were given at least a partial refund.

 

Is it possible that she reacted to gluten/wheat in the air?  I have sometimes gotten very sick from smelling gluten.  Bread baking, instant oatmeal, etc.

 

Hugs to you both.

[sbgrace]

I would want a refund. If they really served things labeled wheat and gluten free, I don't know that I would demand one.

 

My son has had serious reactions due to cross contamination in food prep. I would want to know all brands and products they used to share with the allergist. It's possible it's something new (sesame would be my top concern). My guess, though, is she had cross from either the factory or food prep.

 

I hope she's ok . We nearly lost my son with a biphasic reaction hours after the first reaction.  I didn't know it could happen.

 

I've taken his food everywhere after he reacted twice to "safe" foods people provided him when he was younger. Recently, I've started to loosen up a bit in some very specific circumstances because it's hard to always be different and it's nice to be able to eat "with" everyone else.  I'm rethinking that reading your story. So scary. Be easy on yourself--you had every reason to expect this to be safe for her.

Edited October 18, 2016 by sbgrace

[38carrots]

She is doing better. Thank you. The problem is that I specifically told them that contact with non-GF food is fine. And it is fine. We used the same toaster. We don't wipe surfaces. The allergist insisted that we don't make her life more gluten free than it is. So on the application form I said that "contact with non GF food is fine"--I didn't want them to overreact and use a GF kitchen. However, ingesting gluten / wheat causes anaphylaxis, and this is what I stated as well.

 

So I don't I have a clear case with them... However, writing a letter still. It also turned out that the other aspects of the event were not as advertised.

[bettyandbob]

She is doing better. Thank you. The problem is that I specifically told them that contact with non-GF food is fine. And it is fine. We used the same toaster. We don't wipe surfaces. The allergist insisted that we don't make her life more gluten free than it is. So on the application form I said that "contact with non GF food is fine"--I didn't want them to overreact and use a GF kitchen. However, ingesting gluten / wheat causes anaphylaxis, and this is what I stated as well.

 

So I don't I have a clear case with them... However, writing a letter still. It also turned out that the other aspects of the event were not as advertised.

 

 

I would still request a partial refund. I would push the not as advertised aspects. I might not get a response, but I might be surprised. If it's not too much trouble it's worth a shot.

 

For your dd I think you need to go back the allergist or find a new one and go over the latest reaction and review the protocol previously prescribed. It sounds like that protocol is no longer and may never have been the right approach for your dd. 

[Guest]

I'm glad she is feeling better.  

 

I have a couple of side comments.  I want to agree with Katy, above, re: the difference in what people call allergies.  I'll use an example.  I can't eat dairy.  At all.  Used to be able to, can't anymore.  The reaction is serious, scary and hard to recover from.  I have a friend who is allergic to dairy.  She gets an upset stomach and doesn't sleep well for a night.  The other day we were at a wedding reception; every single thing on the table had wheat and dairy in it, except for the bowls of whole apples.  My friend ate a full meal, acknowledging that she would simply have to get back on her diet the next day, and that she was going to pay for this, but my goodness it was yummy !  (It DID look yummy!)  I ate an apple.  Both of us would say we are allergic to dairy, but that means completely different things.  And both of us had a good time at the reception!  (I ate before I went to the wedding, per my Rules for Living with Allergies.)

 

When I was at a conference in California when I was 15, there was not one thing I could eat for four meals in a row.  I didn't have the sense to go ask for some fresh fruit (I was pretty naive at 15), so I just sucked it up.  NOW I would know to ask, and NOW I would know to bring my own food anyway.  I tell you this so that you will know that your daughter CAN handle things, that she CAN be self-reliant and manage this.  I'm the world's least assertive person, but in this area, I have managed to say what I need...if I can, anyone can--and in many languages!  I feel strong and safe, not fearful and victimized--and I am thankful for that.  I owe a LOT of that attitude to my mom, whose attitude was pretty much, "Suck it up, buttercup.  You can do this."  I'm very thankful to her (but I admit to wanting more coddling at the time!).  

 

Finally, I totally agree with pursuing the further understanding of allergies.  I had allergy testing done a number of years ago, and the things that give me very serious reactions showed up as "Zero Allergy" on the blood and skin tests.  This happened because I don't eat those things *because I am seriously allergic!*, and so there are no antibodies to test against.  The same thing could be true for things your daughter *never eats*--so while the allergen might have been the wheat in the mixture, it could as easily have been a spice or herb or seasoning or ingredient you never use at home and that she has never run across before.  That is what is frustrating about allergies.  You just *never know*.

 

And that is a very good reason to *always* be prepared.  Your DD should *always* have Benedryl (or whatever her doctor recommends) on her person.  I carry chewable tablets as the medicine enters the system more quickly; at home/church/in the car, I use children's liquid for the same reason.  It enters the system through the mouth, not awaiting digestion.  It's much faster in quelling the reaction.  Perhaps with this severity, she needs an EpiPen.  She should have reasonably quick access to some buffered (vitamin) C which moves the allergens through the system more quickly.  

 

When she is not in your presence (which will likely happen on a more long-term basis in the coming years), say at school or at a conference or whatever, it would be really helpful to have a specific person identified who knows the seriousness of the situation and what to do if a reaction happens.  While your daughter is a minor, you should ensure that any people in this role have a medical release for signed by you.  (Yes, Mom did this with me, and I have done all of this with my son.  It was important to me that he be safe, but also that his life not be one filled with fear.  He outgrew his issues.)

 

It sounds like the conference was a bust, all things told, and that maybe this experience taught more than the conference would have done.  I wish the subject matter would have been a happier one.  

 

ETA:  It would be a good idea to get a doctor's advice for your specific situation.  I have learned a lot, myself, from reading this thread, and it is just possible that I should get an EpiPen instead of relying so much on Benadryl.  So far, it has worked for me, as my allergic reactions don't involve throwing up...but you never know, and it might be a wiser path for me.  So I, too, should talk to my doctor.  :0)

 

 

[Butter]

If she regularly has gluten/wheat cross contamination, it is highly unlikely it was the wrap prepared in a place where wheat is processed that caused her reaction.  If she does not have anaphylactic reactions with the cross contamination at home, I'd strongly suspect there is some other allergy going on.  For that reason I would want to know each thing (brand and ingredients list) used in everything she ate and take that to the allergist.  Anaphylactic allergies are scary so finding out exactly what happened/what caused it would be a huge priority for me.

 

Because you said contact with gluten/wheat in the kitchen is not a problem, I wouldn't expect them to have any concern with something marked that it is GF but made in a place that processes wheat.  I still think you should at least ask for a refund since she ended up not being able to participate because of the food, but I don't think it was totally their fault and if they adamantly refuse I wouldn't push very hard.  They did take precautions exactly as you laid them out.

[TX Native]

I am sorry this happened. I would not conclude the only reason she had a reaction was that the food preparers/servers didn't follow strict allergy free food prep procedures. They could have been in error. If it were possible to prove it was their fault, then I would ask for a refund in a heartbeat. I would not ask for a refund under the assumption they prepped or served something in error. It is true that they could have done everything right and your dd reacted to something else. I would ask for a refund based on the conference not being as advertised.

 

I want to advise you as others have above. Get a list of every ingredient she ate for that meal. Take that to the allergist. Have her carry chewable Benadryl and an Epipen at all times. If you haven't called her doctor about this, you should let him/her know.

[shanvan]

Is your DD sleeping now? Are you familiar with rebound reactions? They can happen up to 12 hours after the first reaction. They are often worse. Watch your DD like a hawk. All night.

 

Two body systems = epipen.

 

Please. I don't mean to sound alarmist, but I'm alarmed for you. Our allergist would have insisted we epi for the symptoms you describe. Fortunately, it didn't progress, but goodness, that's fortunate!!! A rebound reaction tonight could be worse - please epi for another reaction tonight.

 

((Hugs))

 

I can't help with the other info, I'm just alarmed for you and grateful she's ok.

Could not agree more.  We have been told by Dd allergist and ER doctors that most people do not administer the epi pen when they should.  I (or Dd) am to use the epi pen if there is a hint of an allergic reaction.  I do not understand when I hear that people give benadryl. When we were first dealing with anaphylaxis I did try getting away with benadryl.  It did not work b/c when you have a child throwing up, they throw up most of the benadryl too.

 

I had to use epic pen on Dd last weekend and I did watch her like a hawk for rebound reaction.  I am so sorry for what happened to your Dd.  I have learned that people DO NOT understand and you cannot believe them when they tell you they do--not ever.  

Edited October 19, 2016 by shanvan

[zoobie]

Refunding your money as consideration for signing a waiver of liability would be what I'd suggest to the group if I were advising them from a legal standpoint. Depending on the specific facts, I might suggest they refund your travel expenses as well. I don't know if they're a legit group with legal counsel, but I hope they respond to your requests in a reasonable manner. And that your daughter is doing well.  

[Lanny]

I would be thankful my DD survived that. I probably would have taken my DD to the E.R.   Possibly, if one is going on an airline flight, and one requests a Special Meal (Kosher, Diabetic, Seafood, Salt Free, etc.) one can place their trust in the catering department.   In the case you described, It sounds like they promised something they could not deliver.  I am assuming that you are correct that there was something your DD was allergic to, and that it was not a simple case of food poisoning, which is very common at catered events.  I hope your DD is OK now!

[Spryte]

Could not agree more. We have been told by Dd allergist and ER doctors that most people do not administer the epi pen when they should. I (or Dd) am to use the epi pen if there is a hint of an allergic reaction. I do not understand when I hear that people give benadryl. When we were first dealing with anaphylaxis I did try getting away with benadryl. It did not work b/c when you have a child throwing up, they throw up most of the benadryl too.

 

I had to use epic pen on Dd last weekend and I did watch her like a hawk for rebound reaction. I am so sorry for what happened to your Dd. I have learned that people DO NOT understand and you cannot believe them when they tell you they do--not ever.

I'm glad your DD is ok, too. Goodness. It's so scary. You did the right thing though!

 

We've had a lot of close calls. I have been told multiple times by the allergist, "Yes, you should have used the epipen for that. You are lucky." I understand the hesitation to use it, deeply, but delayed epipen is the reason many people don't have good outcomes. I now go straight to the epi if we have two body systems. And no Benadryl. Our allergist nixed that. Benadryl won't stop anaphylaxis, and it can make it harder to tell what's going on, in a reaction.

 

OP, I'm just glad your DD is ok.

[Guest]

Could not agree more.  We have been told by Dd allergist and ER doctors that most people do not administer the epi pen when they should.  I (or Dd) am to use the epi pen if there is a hint of an allergic reaction.  I do not understand when I hear that people give benadryl. When we were first dealing with anaphylaxis I did try getting away with benadryl.  It did not work b/c when you have a child throwing up, they throw up most of the benadryl too.

 

I had to use epic pen on Dd last weekend and I did watch her like a hawk for rebound reaction.  I am so sorry for what happened to your Dd.  I have learned that people DO NOT understand and you cannot believe them when they tell you they do--not ever.  

 

This was interesting to me, and I edited my post (above) to reflect what you have said here.  My own personal reactions do not involve throwing up, so the Benedryl has worked.  Nevertheless, it is likely I should talk to my Dr. and learn about the EpiPen option.  It's easy to live on old knowledge (a 59-year lifetime of dealing with this...and yet it never occurs to me that medical knowledge has advanced in that time--duh).  It might be a good change in protocol for me.  

 

I do stand by the "being prepared" and taking this on as something that can be handled not as a victim but as a strong and self-reliant person.  

[StephanieZ]

I would ask for a refund of the event fees, since the sudden illness prevented full participation (but I wouldn't fight very long or hard if they refused), but I wouldn't ask for (or expect) reimbursement for related costs (housing, travel) unless they were bundled in with the event fee. 

 

I think you're simply learning the hard lessons of what it's like to live with severe allergies. It takes years to figure all this stuff out. And, you're probably learning why many events wouldn't even *try* to offer allergen free food. If I were hosting an event, I would never try to guarantee the food was free of allergens. Only a professional food service establishment with relevant training and equipment could even hope to be successful in that regard.

 

We have a family friend with severe nut allergies, and I was *relieved* when they didn't show up at a recent large casual home-prepared food event we hosted. We had told people not to bring nuts, and we'd done our best and certainly not served them. . . But, we cooked for 50 people, plus guest brought ancillary items, tons of food and a full meal for a 12+ hour event, and I have no idea what condiments, flavor packets, etc might have been included that could have trace amounts of nuts or been made in the same place as nuts are processed, or whatever. And, FWIW, the mom of the child with the allergies goes EVERYWHERE with this kid still, at age 13-14? now . . . She was some sort of professional (medical? technical?) and as far as I can tell, she quit to manage her kid's allergen issues. She is the parent volunteer 24/7 at nearly every thing her kid does . . . I'm sure she believes (likely for good reason) that she is the only person who can keep her kid alive, and I expect I'd feel similarly in her shoes. 

 

I imagine that the hosts of this event will never again try to offer allergen free foods . . . It is too risky. 

 

Everyone with severe allergies (self included) has occasional events of exposure unless they live in a bubble. 17 years into knowing my food allergies, I've gone from an exposure every couple months to an exposure every couple years. This is because I make a lot of conservative choices to avoid risk taking. I am on a trip with dh, and today, dh and I went to a well rated local eatery for lunch . . . and we walked back out when we realized they don't have a menu and the staff were not fluent English speakers. BTDT, it's probably 50/50 chance that I'd end up exposed. Not worth it. We went back to the known entity down the block . . . It's just not worth the risk. You'll learn more and more what situations/foods/etc are higher risk, and your dd will learn the hard way to just stay hungry or eat the crummy snack bars that you'll always have in her purse. 

 

At the end of the day, what you and your dd will learn is that only SHE can assure she stays safe. It sucks. But, that's the way it is when you have allergic reactions to trace amounts of common foods. No one else can understand, and no home kitchen or volunteer cooks/organizers are going to be able to ensure safety. Period. Ever. 

 

 

 

 

Edited October 20, 2016 by StephanieZ

[StephanieZ]

ps. I've had long talks about epinephrine use with various medical professionals, and I've NEVER had to use mine, even though it's always in my purse. My understanding is that it should be used for a severe reaction, but that it has a *very* short time of helpfulness (minutes, not hours . . . which complicates anaphylaxis management in wilderness situations where it would take hours to evacuate), and the point of using it is to keep you alive en route to the ER. Meanwhile, antihistamines (liquid is ideal as it is more rapidly absorbed, thus the bottles of children's Benadryl ) are longer acting and will, of course, be utilized at the ER, etc. My allergist told me to take the liquid antihistamines at the first sign of a reaction . ..  and to use to EpiPen if that isn't working. I've used antihistamines dozens of times for reactions, and NEVER had to use epinephrine. I see an allergist regularly, so I'm not making this up, and I've NEVER been told "You should have used the EpiPen."

 

For me, since I've long ago learned to eat new foods or those with any chance of containing my allergens slowly, and my reactions begin within moments of ingesting an allergen, I've always been able to stop eating, grab my Benadryl, and go sleep it off. No EpiPens. No ERs. Just my personal experience . . .

 

I'd *strongly* advise anyone with life threatening allergies to discuss with their allergist, at length, and repeated each year or two as issues and treatment options evolve, the appropriate strategy for managing reactions under all likely environments. If you, like me, regularly travel to places w/o advanced medical care and/or wilderness areas where evacuation could take hours to days, you need to have a much better plan that "Use the EpiPen and go to the ER" (We regularly travel to the Caribbean, wilderness areas, et . . . where my kids with Wilderness First Aid certifications and my dh who is a veterinarian are probably better medically prepared than anyone within an hour's or even a day's reach . . .) I'd much rather travel w/o an EpiPen than travel w/o antihistimines (and steroids, too, for severe emergencies, when traveling off-the-grid ). . . An EpiPen won't do me any good 10 mile hike + 3 hour drive to the nearest medical provider . . . Now, if I were a regular user of EpiPens, I'd probably go ahead and get vial(s) and syringes of epinephrine for those situations, as those can be used repeatedly as needed . . . Again, I urge anyone to really consult their doctors about all their options and to have a good plan for their own situation. 

Edited October 19, 2016 by StephanieZ

[TX Native]

StephanieZ, thank you for the above info. I am in charge of others' kids in volunteer roles quite frequently and never know if I would give Benadryl 1st or go straight for the epi. I never want to give the epi if not needed, but I definitely want to give the epi if needed. I went to nursing school eons ago, but this was not an issue then so I only have what the parent tells me to do and what I find on the Internet to go by. Some parents just say "here's the Epipen if needed, thanks, goodbye!" and don't know themselves a step by step protocol for exposure and/or a mild vs severe reaction. I wish the American Heart Association would add EpiPen use as an add on with Basic Life Support classes since it is now just as likely to encounter a public situation needing anaphylaxis management as giving CPR. I asked in my last recertification class and they consider it a separate ballgame than CPR. It is different, but they still should add it since they have stroke management and choking in the same class. It would also be nice for every doctor to give a simple list set protocol for each child/adult with severe allergies that marks out steps to follow in case of 1. Exposure to allergens without reactions 2. Exposure to allergen with mild reaction (such as indigestion) 3. Exposure to allergens with severe reaction (such as OP's dd had.). It is confusing if some doctors say give Benadryl and wait if no symptoms or only mild symptoms and others say go straight for the Epipen.

Edited October 20, 2016 by TX native

[Guest]

I would ask for a refund of the event fees,...snip...

At the end of the day, what you and your dd will learn is that only SHE can assure she stays safe. It sucks. But, that's the way it is when you have allergic reactions to trace amounts of common foods. No one else can understand, and no home kitchen or volunteer cooks/organizers are going to be able to ensure safety. Period. Ever. 

Stephanie, I didn't want to quote the whole post, but I did want to pipe up and say that my experience has been very similar to yours...managing with Benedryl and so on, and I found your info interesting and helpful.  

 

A friend has a potentially debilitating auto-immune disease and she said something so interesting the other day:  "I can live with this.  The disease doesn't control me, but I do have to make room for it in my life."  That's about how I feel regarding the allergy thing.  It doesn't rule over me, but I do have to make room for it.  C'est la vie.