mangofandango: (ff/drankmywar/problematic)
And it's not pretty.

Sophie's detailed results of her recent allergy testing arrived today. This post provides a little background about the numbers and stuff, but: last year, her peanut result was 51.9 - strongly positive. (The threshold for "100% likely to react if exposed" is 14.) This year, her result was 85.9. That is a number, when it comes to peanuts especially, that scares the crap out of me.

Eggs went up too, but they are not as dramatic either in increase or level. This year egg white was 27.9 and yolk is 11 (last year it was 18 something and 9). She's still nearly 100% likely to react if exposed, but odds are better with egg in terms of the severity of the reaction.

I used to say that if I could pick one, I hoped she'd outgrow egg. I totally take that back. Egg is something people don't understand as well, and eggs are harder, I think, to avoid. But egg is generally less likely to result in anaphylaxis. Peanuts are generally much more dangerous. And I read that news not too long ago about the 13 year old girl who died because she took one bite of a peanut butter rice krispie treat, by accident, and then spit it out, was given antihistamines and stuck with 3 Epi-pens and died anyway.

Screw making life easier, I just want Sophie to NOT DIE.

(I am grateful that we are as lucky as we are, in so many ways, with her. She is generally healthy and happy and doesn't face certain death or anything. But sometimes I still get really, really upset that she can be killed by a fucking peanut. Or a trace of a peanut. It could happen so easily, and I know that's true of car accidents and everything else but you know, it's a fucking peanut. It's nothing. It's like everyone around us carries bombs that might go off any minute.)

After the results came in the mail, Sophie noticed I was a bit snappy with her, and I decided to be honest. I said "I'm sorry, it's just that your allergy test results came and the numbers were higher this year, which means you're still very very allergic to peanuts and eggs. I'm just feeling a little bit sad about that." She said "You don't have to worry about it Mama, that's just how life is." Yes. And yet, little girl, and yet.
mangofandango: (ad/ funkybaby/ buy curious)
I am sort of tempted sometimes to write some sort of "How To Be A Restaurant and Address Food Allergic Customers" guide. This is on the list with my "Understanding Food Allergy 101" guide and my "How Not To Be A Condescending Jackass To Your Patients: A Guide for Health Care Practitioners" guide. But today, I am thinking about the first one. ;)

Sophie is dangerously allergic to eggs and nuts. We sometimes go out to eat, which is a risk many food allergic people do not take, but I have found a few places I trust. Sometimes a place seems possibly okay and I want to check it out, so I call and ask if they can safely feed us. Today I wanted to double check a place we haven't been to in a very long time, and got a...very confident but incredibly bored answer, which...I mean, maybe she's just that sure! But I'm not, and it's nice when your service establishment gives a flying fuck about customer's questions but especially as they pertain to SAFETY ISSUES. So, for the sake of my venting:

Say I call your establishment, describe my daughter's allergies, and ask whether you can safely feed us. Here's what you can do wrong:

*Demonstrate total cluelessness. I mean, actually, this is a clear answer for me in and of itself, but it looks bad for you on several levels. Know whether dairy and eggs are the same thing, okay? You serve FOOD FOR A LIVING. Know that mayo contains eggs. Ideally, it would be great if your staff knew what oils you typically fry in, and even whether there is a procedure in place for allergic orders, but I don't mind if they have to ask as long as they do.

* Demonstrate total disinterest. It's bad customer service, and it makes me question your response regardless of what it is. People answering phones and waiting tables should at least know how to act like they give a crap, and when it's a potentially dangerous situation, they should actually care. If it is dangerous, or you aren't comfortable having me there, I won't come in - but I really want to know, if it's a question you can answer.

Things that are annoying but understandable:

* Saying "There are eggs in the building so I can't make any guarantees." I understand why some people feel they have to say things like that. In fact, I'd much rather have a legal CYA response than a totally indifferent answer, because in this case I know that as an establishment you don't want to take me on. That's acceptable.

Things that are awesome and make me feel safe with you:

*Have a very precise and describable routine in place for food allergic orders, if you're going to take them.

*Demonstrate food allergy awareness. Know the major allergens, know what they are in, know how to avoid contamination.

*Have staff that demonstrate an appropriate respect for the seriousness of the allergy, while also treating the allergic person kindly. Act like you want us to be there and you're going to keep us safe, if you actually intend to do the work of keeping us safe.

*When in doubt, don't guess - ask.

*Post allergy statements, give me more information than I asked for, make it known that you can handle this stuff with competence.

I sometimes have the sense that I will be judged for taking my dangerously allergic child to any restaurant in the first place. I get that it's a risk. For us though, a lot of things involve some level of risk - playgrounds are a risk (kids eat nutty granola bars on the equipment), other people's houses are a risk (do you know where your kids last ate peanut butter?), the world is full of food contamination. I do a lot to mitigate it, it's a constant thing. But sometimes, we need food, sometimes when we are not at home. I actually do a lot to avoid that situation, but sometimes we want to be able to eat out. A very few restaurants can really do a very careful and thorough job of taking care of us, and I feel safe in those places. All I want to know is: are you one of them, or not? This is how I keep my child safe. I depend upon your answer being a thorough and thoughtful one.

PS: I read this very long but worthwhile piece on severe food allergies and treating them, the other day. I identified so much with it that I wanted to cry. That precipice that only we can see thing? That is my life. I hope that treatment is available very soon, because I would love for that little girl eating normal old store-bought birthday cake to be Sophie someday. (Ahaha, that sentence. You know what I mean.)
mangofandango: (ff/drankmywar/problematic)
I am going to write all this down for my own sanity, to sort it all out and to be able to find things later. I figure maybe someone will be interested, also, but if not, please scroll on by. :)

Things I have learned about allergy blood tests results, no thanks to the allergist: )


mangofandango: (Default)

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