Where do you draw the line...

Posted on: Sat, 02/03/2007 - 2:08am
Corvallis Mom's picture
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Joined: 05/22/2001 - 09:00

Just a bit curious after a few recent (rather heated, in some cases [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] ) threads.

What is [i]in your own estimation[/i] "just too much to ask" of others, with respect to accommodation of PA?

If you don't mind, I'd also like for you to explain if you feel reaction history/length of time handling PA/multiplicity and/or severity of other food allergies plays into that.

Because I'm curious, I'd also like to know about reaction history/sensitivity because I think that may influence where people's "lines" are... at least on average.

And finally, what do you do when you NEED something that crosses your "line?" Do you have a strategy?

[Just one final thought-- I know that this is going to be [i]very strongly[/i] influenced by personal comfort zone, and probably by reaction history... please let people express their honest opinions here, okay? [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]]

Posted on: Sat, 02/03/2007 - 2:34am
McCobbre's picture
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Please, no one quote me. I may delete some of this later.
And I may give a more thorough answer later. This is more of an emotional answer.
I hate to admit it, but there have been times--dinner parties where DH's job is involved--where my line changes. It depends on how well we know them, how comfortable I am moving the bowl of nuts on the table. I do it when I am really comfortable around people. I've not done it when I'm not as comfortable and when I'm worried about how people will react. In my husband's line of work, people get offended easily. He works for a large group of folks. It's just hard sometimes. I know there are some folks there who will never understand, but if we don't go, it will completely backfire on DH. He's not always in a position to call the shots.
It's very sad but true.
However, I wouldn't stay if there were several bowls of nuts and there weren't a way for DS to avoid them. Maybe that's the line in those very difficult situations. Truly, if I don't think I can keep him safe, then I remove him from the situation.
It would be nice for folks to be accomodating always, but they're never going to get this the way we do. I don't know if it's fair to expect non-family to.
I do tell DS this, though, that if we're invited over to eat somewhere (and it's safe for him to eat), we can expect people to accomodate the peanut allergy to some extent, but his vegetarianism is a choice, and we do not expect accomodation there. He's "on his own," so to speak, to eat what's available.

Posted on: Sat, 02/03/2007 - 2:43am
chanda4's picture
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We have been dealing with multiple food allergies since Jake was age 1(he's now 6). With Carson since 4 weeks and Savannah since 2 weeks(kids names/ages listed in signature). So I guess you could say I am fairly new...within the last 5 years. Over those 5 years I have never administered an Epipen, but I have come close enough I should have.
Jake has had 5 or 6 episodes where his throat has squeezed tight from nuts(peanut, pistachio) and egg. I though, before, Epipens were only used if they couldn't breath....as a last resort(like they were passed out), but I have since learned it should be used first. I am using the scale now, if just one reaction is happening I will use bendryl or Zyrtec....if two reactions, then I will get out the epi.
Carson has had no reactions other then stomach pain and hives. And Savannah has had hives, stomach pain and facial swelling(to milk)
Okay, with that said....I have voiced my opinion that I need to draw a line somewhere. As much as, in a dream life, it would be awesome to have a peanut-free shcool....I think it is way too much to ask. For *ME* (and I focus on ME) if Jake's school was peanut-free....I would fall under those that felt a *false sense of security*. This all became very real the day Jake started full day Kindergarten, and started eating lunch at school. I had no idea the possibilities that he came into contact with EVERYDAY that could possibly cause a reaction until he stepped foot iside that school. For 5yrs he was home(or at preschool where they didn't have lunch) so I had no idea how dangerous just lunch could be. Call me nieve..thank you. But if I didn't have to worry about it each and every day, I would become too lax, I know I would. Alot of people don't, that is great, but I know if he forgot his Epipen, if his school were nut free, I may say "oh, he'll be okay, I'll make sure he has it tomorrow". A false sense of securtity(for ME)
I kept him as safe as I could at home, so in a sense we lived inside our bubble. But he now is out of the bubble and in the world, just like he will be for the rest of his life. I can not protect him from everything, I can try, but that's impossible.
So..........what I *CAN* do is focus on teaching him to keep himself safe. "what should you do if your friend is eating a pb&j"??? You sit away from him and ask your friend(or educate them to do it themself) to wash their hands when they are done, then continue playing.
I wouldn't want a peanut-ban...that wouldn't help us anyways. We deal with all nuts, peanut, eggs and milk on a severe level. Should I really expect the school to ban all of it? What about our friend who's anaphylaxic to wheat, so none of the kids can bring bread to school?? That is my issue to *where do we draw the line*.
We want to focus so much on our child, which is fine. Keep them safe and out of harms way. But doing it *all* for them doesn't teach them anything. Doesn't prepare them for middle school, for playing sports, for doing homework at a friends, for high school, social parties, college and even work. If I don't teach him now how to keep himself safe, in 20 years when he's working some place, is he going to freak out in the lunchroom because a co worker is eating peanut butter?? Hopefully, from what he's learned, he will wipe down his table(away from the peanut butter eater) eat his lunch, wash his hands and continue on his way.
I will stop here, I would love to see where others are. I know I am a minortiy here, and that is okay. Honestly I have learned a ton from those that are a little more hard core, I have...thank you! I hope you respect my view, because I will respect whatever anyone says here. HUGS
------------------
Chanda(mother of 4)
Sidney-8 (beef and chocolate, grasses, molds, weeds, guinea pig & asthma)
Jake-6 (peanut, all tree nuts, eggs, trees, grasses, weeds, molds, cats, dogs, guinea pig & eczema & asthma)
Carson-3 1/2 (milk, soy, egg, beef and pork, cats, dog, guinea pig)
Savannah-1 (milk and egg)

Posted on: Sat, 02/03/2007 - 3:30am
gvmom's picture
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Just a bit curious after a few recent (rather heated, in some cases ) threads.
[b]What is in your own estimation "just too much to ask" of others, with respect to accommodation of PA? [/b]
I think this is relative to where and who is involved. For example:
We don

Posted on: Sat, 02/03/2007 - 4:04am
lalow's picture
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Joined: 03/24/2004 - 09:00

There are no peanuts in my house. Other than that I ask people not to eat peanuts or peanut products around my son especially if i am not there (i.e. playdate). Otherwise, we bring his own food everywhere and I ask for little accomidations. If someone asks so that he can be included we discuss what he can have etc. I dont ask friends not eat peanuts (but few do) around him but I do ask people to wash hands if they have been. He is not in school and I am going to homeschool most likely so I dont know what i would do with that. I personally dont think people can be trusted to remember so I dont expect them to.
------------------
Lalow
James 5 yrs, NKA
Ben 4 yrs, PA and MA

Posted on: Sat, 02/03/2007 - 4:05am
bandbmom's picture
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Joined: 12/14/2005 - 09:00

We found out DS was PA when he was 2. My sister made him PB&J and set the sandwich in front of him. She said immediately he complained his eyes itched and she noticed little bumps forming around his eyes. She said he picked up the sandwich for a brief moment and then started crying about his eyes itching him very badly. He set the sandwich back down and rubbed his eyes. They immediately swelled completely shut. My sister said there was no visible PB on his hands. The swelling was so severe that he was given an injection of epi in the peds office and some Benadryl. It took about a week for the swelling to completely subside. From that moment our thoughts were "imagine what would have happened if he actually ate the sandwich". We took it very seriously but were not educated at that point about "may contains" and such. Nevertheless, he was small and it was very easy to manage his allergy with no other reactions until 1st grade, where he had two contact reactions. Bottom line, the school wasn't cautious enough. This year in 2nd grade, he's in a new school and doing great.
The school is not pnut free, but they take great precautions to protect the kids. His classroom is peanut free and that's all I ask. We are able to manage his allergy with the pnut free classroom and a pnut free area for PA kids to eat at for lunch outside of the lunchroom.
I expect the school and staff to fully accommodate him during school hours by whatever means possible it would take to keep him safe. Where I draw the line is after school activities and functions. If we feel it is unsafe, he doesn't participate. I wouldn't expect them to change the after school activities for DS. To me, there are some things he just won't be able to participate in realistically and that is just part of his allergic condition. If it's during school hours, that's another story. It is his right to safely participate during school and field trips and 99% of the time there is a safe alternative to something unsafe.
There was an after school football clinic where there was no food and the phys. ed teacher was there, who is epi trained. Unfortunately, only two staff members are trained for his seizure emerg. plan and medicine, so I had to hang out at the school for that event. I chose to stay so he could participate, but I wouldn't expect them to make sure someone was there to handle a seizure because it was after school.
As far as going out to restaurants, we only have maybe two restaurants we feel comfortable going to. If there is an event at someone's home, we bring DS his own food. If the risk seemed to high to attend something, we just wouldn't go or we would leave if it was totally unsafe.
Tracy

Posted on: Sat, 02/03/2007 - 4:27am
ajgauthier's picture
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Joined: 04/13/2005 - 09:00

Here's my adult perspective. Noting that I grew up at a time when there were no PA accomodations at school. I was rare, one child in an entire K12 school system with the allergy (about 100-150 kids in each 'graduating class') Small town... I'm 32, that'll tell you how long ago it was.
So...always needing to fend for myself, keep myself safe...make smart decisions and remove myself when necessary...here is 'my line' as an adult.
I expect (and demand if necessary) that my immediate area in the workplace is peanut/treenut free. I've worked in large rooms with lots of cubicles and a shared kitchen nearby, and now I'm in an office I share with 3 people. The microwave is down the hall and up a ramp. At this job --- my office is pn/tn free, even when I am not 'in' so that residue isn't on surfaces. I've had no problems with this at all, everyone is super about it. I don't make this microwave 'pn free' b/c it's shared by about 200 people in the building. Not a problem, I rarely want a hot lunch. Now...in a part time job I had last year, I had a problem with an officemate and a jar of peanuts she was sneak-eating while I was sitting 6 feet away from her. My supervisor took care it, reprimanded her, and it was no longer a problem.
To draw the lines with friends...and eating at their house. There is only 1 friend I trust to cook for me. Everyone else, I just bring my own food. They know that if they are serving anything nuts/peanuts I won't go just b/c of the odor. That's my line. They are ok with it.
Same line for restaurants...if I had a business dinner at a Thai or Asian place, I wouldn't go. Period...can't breathe the air (I had a minor breathing reaction a few years ago at a Thai Fusion place...) Period, no matter what the consequences. My line of work though, doesn't lead itself to this sort of company politics.
I never made my college dorm cafeteria (small college, 1 eating area) go peanut/tn free. However, they tried the best they could to accomodate me and keep me informed of ingredients. I got special compensation to NOT be on the required meal plan from residence life, AND to live in one of the 'apartment style' places so I could have a kitchen. There...I did not require peanut free from my 11 other housemates...but they 'got it', atleast in front of me. I had my own cookware, utensils, plates, and cleaning sponge. But...this was common, everyone 'had their own' so it really wasn't out of place.
Living in my place today...it's not 'peanut free' in that my roommate has pb icecream sometimes and has a jar of pn butter in her cabinet. She also has loose nuts. However, there are rules! Cleaning up after herself when she eats pb has a rule, cooking things in common pans has a rule, no loose nut eating in the house, etc. She's followed them, she gets it completely, and I feel safe. I'm not sure I'd have the same experience with someone else.
So I think those are my lines. I haven't had an ingestion reaction in over 16 years now! I have had random contact (local, not all over hives) and smell reactions (mild, like an environmental allergy)...but no intake of peanuts or tree nuts into my digestion system to cause any sort of reaction. I *am* still allergic (Class V on RAST, unmistakeable), but am careful (within my own comfort level).
I've come to the conclusion that I probably don't react to 'traces left by shared equipment' b/c I don't have any 'mystery reactions' like some of the children do. I *do* not eat food labeled as such, but I also don't go calling manufacturers. Though, I tend to stay away from 'same facility' until I can verify with the company that it's not shared equipment, but just the same building (like Kit Kats).
Anyway, my adult 2 cents [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
Adrienne
------------------
30-something survivor of severe peanut/tree nut allergy

Posted on: Sat, 02/03/2007 - 4:57am
Going Nuts's picture
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We've been at this for about 11 1/2 years. DS was originally also allergic to milk, but fortunately outgrew that right around his 5th birthday. He is currently allergic to peanuts, tree nuts, sesame, chick peas and seems to react to unprocessed soy (soy milk, tofu, edamame, etc.).
[b]What is in your own estimation "just too much to ask" of others, with respect to accommodation of PA?[/b]
For anyone other than close family, anything that radically alters their normal way of operating is just too much. For example, I would never ask his friends' families to rid their homes of peanuts, etc., just not to serve them when he is there. When DS was younger I did not request a peanut ban in school, just that his classroom and table be peanut/nut free. I know a lot of people here don't buy the "slippery slope" argument, but my friend's son starts wheezing if someone in the next room opens a tuna sandwich, and I know of a boy who was splattered by milk at lunch and ended up in ICU for 2 weeks. Do I expect all risky foods to be banned? No.
While my son is contact/airborne sensitive, he's had far fewer of these reactions over the years. I've instilled in him the necessity frequent hand-washing, and he knows to keep his distance from certain classmates after lunch. It's been (knock wood, poo-poo-poo) about 5 years since his last "peanut on the breath" airborne reaction.
[b]And finally, what do you do when you NEED something that crosses your "line?" Do you have a strategy?[/b]
Hard to answer because it varies on a case by case basis. I guess the most recent example that comes to mind was about a year ago when we were visiting friends out of state. They really wanted us to come over for dinner, and while it had been several years since we'd seen them and they really weren't aware of our situation, I lay it all out on the line for them. I told them what we needed in order to do it, and they were most receptive. (We'll just forget about the fact that DS ended up reacting horribly to their two dogs that had been playing in the leaves all night [img]http://uumor.pair.com/nutalle2/peanutallergy/rolleyes.gif[/img] , at least the food was no problem!) Under normal conditions we would have just brought food for DS, but since it wasn't possible I "crossed my line", and it worked.
Amy

Posted on: Sat, 02/03/2007 - 5:48am
Corvallis Mom's picture
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Thanks everyone! What great thoughtful answers everyone has.
Here are mine.
We've been dealing with MLTFA since DD was 11 months old. Since she nearly died from her first taste of 100-200mg of pb, it was pretty clear that even traces would be a problem, and her egg allergy was diagnosed shortly thereafter. She is sensitive enough to both that it can be nearly impossible to pin down the exact cause of some reactions, including a second that nearly killed her. She is contact and aerosol sensitive and reacts frighteningly fast. Happily, she is no longer soy or wheat allergic, and her milk allergy is a nuisance, but apparently nothing more.
With that said, our approach is very much like Amy's. We simply don't expect other people to alter their day-to-day routine for us. With one huge exception. I do expect cooperation when it comes to following rules (even when they aren't specifically about us). It makes me mad when people eat/drink in places it is clearly verboten.
Our second rule is that there must ALWAYS be an "escape route" for DD. Because her sensitivity is so extreme that we never really know whether or not [i]anything[/i] will be okay other than our own house. Period. [i]So, no false sense of security here, I guess....[/i] [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img]
We feel that we need to teach DD that she must take special precautions to live her life. But that it is very dangerous for her to make assumptions about others' behavior. We let others prepare food for her only VERY RARELY. I can count on one hand the restaurants she has eaten from over the last four years-- and two were at Disneyland.
She has to have a nut and egg-free environment. Simply has to. We do ask for that with friends and family, but we leave immediately if compliance isn't forthcoming.
My last question was a stumper for me as well-- I find that for myself, when the allergy MAKES me ask for things I really don't feel comfortable with.... I tend to opt out unless cooperation is pretty much immediate and willing when I first broach the subject. From the cynical perspective, experience has been a hard taskmaster there-- if they won't do it willingly, it is probably just going to be lip service in the end. Unless I fight. And I often don't want to-- in part because that isn't who my daughter is, either. I would be teaching her something by example that she probably just isn't equipped for tempermentally.
We began homeschooling precisely [i]because[/i] in my heart of hearts, I truly feel that my daughter's [i]needs[/i] are just too far removed from the current reality to be 'reasonable.' And I understand the slippery slope argument... and agree with it, to a point. (Even though it runs smack into what my daughter really [i]needs[/i] as a young child.) Therefore, it crosses that line for me. Airline travel is also out of the question for us, since there is no escape route from the situation. Allergy shots have been a real test of this for us-- DD has no end of problems with systemic inhalation reactions from people eating food near her. We OFTEN have to move into a patient exam room in order to stay the required time after a shot, even though we do our level best to come at very slow times when food isn't likely to be eaten. Even the allergist and his staff find it maddening to determine whether a mild systemic rxn is from food in the waiting room or the shot.
Avoidance only takes you so far, in terms of avoiding risky situations. I have a very difficult time advocating for my daughter when that just isn't enough. I know she doesn't live in 'the real world' because she simply can't. I just wonder if I'm training her to be too passive about her own special needs. She has certain rights too-- and I wonder if sometimes we worry too much about not violating those of others. [ETA: Maybe the better way of saying this is that I worry she will learn to be a virtual contortionist in an effort to "not put anyone else out" over what she needs. It is partly about being unselfish, but it is also about being self-sufficient. It's just that the combination leads to a virtual high-wire act of avoidance and planning-- and even so, frequent disappointments. ] It is very limiting.
Good to hear others' thoughts on this. Mine are definitely colored by my roots in the Northwest. I struggle with it. My knee jerk response is almost always, "Oh, well, let's just go then. We can come another time," "We'll go when it isn't so busy," or "No, thank you for inviting us, though." But there are times when that just doesn't work. And I am inevitably haunted by it internally when I have to ask people I don't know to change something that they are doing. (Really-- I can recount them precisely, even years later...)
[img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
[This message has been edited by Corvallis Mom (edited February 03, 2007).]

Posted on: Sat, 02/03/2007 - 6:03am
AuntAmanda's picture
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I think that depending on who it is, is how much you can ask them to be.
For family and friends, I would hope that they would atleast put away all allergy foods and take the time to wipe their surfaces with Clorex (or like) wipes and vacum carpets (come on now - that takes like what - maybe 30 minutes tops?). I think that should be the very least they should do.
I think someone like a caregiver should either lock cupboards or arrange cupboards in a manner where food allergiens AND dishes/cookware/etc that has come in contact with allergiens is locked away or out of reach and such, has wiped all toys down, and has taken all precautions that parents have asked of them. Including knowing how to operate an EPI pen, know emergancy numbers, CPR, and so forth.
In a perfect world, people would know the very basics of FA and would atleast be accomidating of them. They would be honest about ingrediants in things and about things being possibly cross contiminated with shared machines or plants or whatnot.

Posted on: Sat, 02/03/2007 - 6:10am
chanda4's picture
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I do have to say I respect everyones level of confort here. We are all different and we all need different things.
With that said, I think I agree with Adrienne...having grown up herself with the allergy, she knows how to take care of herself. Making adjustments at work, or at home, but mainly looking out for herself(not asking others to do it for her). That is what I want my son to do. If a situation just isn't safe, you leave. You ask for help when you need it, and make adjustments where necessary. I think you've done a teriffic job!!
I've just recently taken the pb out of the house. We do still have eggs in the fridge. My husband eats them, he cleans up and is careful, and so far no problems. We have milk allergies, but I still have milk for those who can drink it. We just make adjustments where neccessary. If we go to friends for dinner, I read labels and make adjustments(calling ahead about the meal)....bringing some of our own stuff(rice milk and safe butter) but we eat at family or friends usually just fine(not too often). I don't want to hide my kids from the world, I want them to enjoy it, safely....so I do what I need when I need to. We all do.....thanks for sharing your stories!
------------------
Chanda(mother of 4)
Sidney-8 (beef and chocolate, grasses, molds, weeds, guinea pig & asthma)
Jake-6 (peanut, all tree nuts, eggs, trees, grasses, weeds, molds, cats, dogs, guinea pig & eczema & asthma)
Carson-3 1/2 (milk, soy, egg, beef and pork, cats, dog, guinea pig)
Savannah-1 (milk and egg)

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