comfort zones and # of reactions

We have a stricter/narrower comfort zone.

Ryan has had one reaction since diagnosis at age 3. He is now 7 1/2. That reaction was unavoidable--a new cereal box of a brand/cereal he had eaten many, many times before with no peanut warnings/traces, etc. on the box. It wasn't the milk, he drank milk from the same carton the night before.

I have a pretty strict comfort zone. Jordan has been reaction free since discovering his allergies 2 years ago.

I thought that as well.. the more reactions you have, the tighter the comfy zone.

But now, whats a reaction? Systemic meltdown? Accidental exposure? Blotchiness?

I guess my answer could be interpreted many ways.

Our comfort zone is quite lax. To be honest, I dont know WHAT Caitlins labels say on her food anymore. There are very few things we buy from the store, that are processed though, and we've never had any anaph reactions (to peanuts), nor have we had ANY exposure to peanuts (AFAIK).

I'll just leave it at that.

Jason
Caitlin 4-17-00 Allergic to Dairy, Egg, Wheat, Bananas, Grapes, Rye, Sesame, Beef, Garlic, Mustard, Onion, Peas and Avoiding Latex and all Nuts
Sara 2-13-98 NKA (avoiding nuts)
Meghan 2-28-03 Outgrown Reflux - Alimentum feeder, Stopped Zantac - RAST neg to big 8
[url="http://community.webshots.com/user/jtolpin"]http://community.webshots.com/user/jtolpin[/url]

Thanks everyone for your replies. I am looking at this from a very simplistic point of view. That is, I would be curious about any type of reaction (from blotchiness to full blown anaphylaxis). I guess part of my question comes from the fact that my personal experience has been that parents who have a looser comfort zone (i.e. eat "may contains" etc.), are the ones whose children have had some type of reaction. Again, I'm not saying people should or should not eat "may contains", I'm just trying to do a very unscientific survey to see if there is any difference in the number of reactions between people with strict vs. looser comfort zones.

Purely a guess.

Those with strict comfy zones have fewer reactions. But the opposite does not really exist, at least in our situation. Maybe our situation isnt entirely the opposite.

Strict comfy zone = no 'may contains' would most likely have very few reactions (if any)

Lax comfy zone could be 'eats things WITH peanuts' which would most likely yield boat loads of reactions.

Maybe thats not a lax comfy zone, but rather NO comfy zone [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

I know what you're asking, you know what you're asking, the PA folks here know what you're asking.

The answer you would think to hear is 'The more lax your comfy zone, the more reactions will occur'.

But as you know, PA is NOT cut and dry [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Jason of the lax comfy zone [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

mom2four, our comfort zone is similar to yours, absolutely nothing with any type of a warning, nothing from any other countries (we're in Canada), or from companies that I don't trust.

DS had a reaction to a PB cup that he got a hold of at halloween (I hate halloween), DH said we should let him trick or treat and then go through all his loot. While I was intently reading labels he (at age 3) grabbed PB cup and bit into it.

Next was accidental exposure while at a picnic where someone else was eating a thai salad (which we did not know about). DS did not ingest any of the salad but contacted it somehow.

Then the really big one was from a cheesecake with no indication on the label about any possibility about cross contamination. Three bites in he started choking, that was the scariest day of my life and why DS now no longer eats any baked items that I have not made myself.

Next reaction is unkown, but we suspect PB residue on a playground he was at. He was doing the monkey bars then seconds later screamed that his hands hurt (they were covered in hives). Then his whole body was covered in hives and his face and airway started swelling. This was at a school in our district that is not PN free, we were there for DD's softball game.

Compared to most people here, I have a "loose comfort zone". In the past 20 years, I have had zero ingestion reactions. I have had airborne reactions when in a restaurant with loose peanuts being eaten in the bar area so I avoid that type of situation. I have eaten many 'may contains' during the past 20 years.. Mars bar, Breyers vanilla ice cream, Dare cookies, etc, although I have generally stopped doing this since I discovered PA.COM, although I do continue to eat 'may contain tree nuts' as I am not allergic to tree nuts (I am PA only).

The only time of my life when I had several reactions was more than 20 years ago when I did not know anything about cross contamination. Baked goods caused most of these reactions. Marzipan on a cake, a cookie, a Danish pastry. Plus a no-name chocolate bar.

But once I stopped eating most baked goods (except for those made in peanut-free facilities) and once I stopped eating no-name chocolate bars, this seems to have kept me reaction-free (plus a bit of luck of course!).

Personally, I think the risk of eating 'may contains' is dependent on the manufacturer. Some manufacturers such as Breyer's, Dare, etc have stringent cleaning procedures and only place the warning label on their packaging since they do process peanut products on the equipment and even with the strict cleaning, they can not guarantee that the product would be 100% safe. I ate products such as these for many years with no problems. Other manufacturers may not have stringent cleaning procedures between production lines (thinking of no-name granola bars, etc) so there may be a big risk with eating 'may contains'.

So in summary, I am saying that you can have a "looser comfort zone" and still be reaction-free as long as you are careful and alert. Although cross-contamination does happen, so in some cases that 'may contain peanuts' is an important message not to ignore as the product may be unsafe (those are the type of products I avoid) [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Thanks Jason for your perspective. It sounds so simplistic: tighter comfort zones = fewer reactions. But if this was true, wouldn't everyone want to have a tighter comfort zone? And when people make the decision to have a looser comfort zone, how do they make that decision? Are they knowingly risking a reaction (thinking that it would probably be a mild reaction) or do they think they are at no more risk of a reaction than someone who has tighter comfort zones? Again, I'm just curious about the rationale people have. For me, I choose to have a tighter comfort zone because I want to reduce the risk of a reaction as much as possible but I am wondering if there really is such a correlation. I'd really like to hear from people with a looser comfort zone to hear how they have come to their decision.

We don'thave food with any kind of allergen warning for pn, and nothing from companies we don't trust. Ds has had 3 reactions.

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Tina
Trevor age 2 -PA
Harmony age 1 -KNA
It's a BOY!!! due June 24, 2004

Thanks Erik.

You sound like Ann (DW), probably not in reality though...

DW is Anaph to peanuts, and in fact avoids all nuts (she may be anaph to more, but shes never been tested. She under the impression shes allergic to all nuts, except walnuts)

She had probably 2 reactions in the 13 yrs Ive known her. She avoids thai food (given), peanut products (given), and most baked goods out (given). For some baked goods, shell have me taste it first, and if it doesnt taste peanutty, she'll eat it.

She eats pretty much waht she wants. We dont hit many restaurants with the kids (obviously), nor with out them (another obvious!), but if we do, she knows enough to get something that looks safe.

We dont buy new foods for us in the house often, but we'll read the label... And have become more aware of foods given the girls situations...

You know im getting old, when I lose my train of thought like THAT. I should just delete this post, but I do want to say thanks for the insights!

Jason

Quote:Originally posted by erik:
[b]Compared to most people here, I have a "loose comfort zone". In the past 20 years, I have had zero ingestion reactions. I have had airborne reactions when in a restaurant with loose peanuts being eaten in the bar area so I avoid that type of situation. I have eaten many 'may contains' during the past 20 years.. Mars bar, Breyers vanilla ice cream, Dare cookies, etc, although I have generally stopped doing this since I discovered PA.COM, although I do continue to eat 'may contain tree nuts' as I am not allergic to tree nuts (I am PA only).

The only time of my life when I had several reactions was more than 20 years ago when I did not know anything about cross contamination. Baked goods caused most of these reactions. Marzipan on a cake, a cookie, a Danish pastry. Plus a no-name chocolate bar.

But once I stopped eating most baked goods (except for those made in peanut-free facilities) and once I stopped eating no-name chocolate bars, this seems to have kept me reaction-free (plus a bit of luck of course!).

Personally, I think the risk of eating 'may contains' is dependent on the manufacturer. Some manufacturers such as Breyer's, Dare, etc have stringent cleaning procedures and only place the warning label on their packaging since they do process peanut products on the equipment and even with the strict cleaning, they can not guarantee that the product would be 100% safe. I ate products such as these for many years with no problems. Other manufacturers may not have stringent cleaning procedures between production lines (thinking of no-name granola bars, etc) so there may be a big risk with eating 'may contains'.

So in summary, I am saying that you can have a "looser comfort zone" and still be reaction-free as long as you are careful and alert. Although cross-contamination does happen, so in some cases that 'may contain peanuts' is an important message not to ignore as the product may be unsafe (those are the type of products I avoid) [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img][/b]

Quote:Originally posted by erik:
[b] Mars bar, Breyers vanilla ice cream, Dare cookies, etc, although I have generally stopped doing this since I discovered PA.COM, although I do continue to eat 'may contain tree nuts' as I am not allergic to tree nuts (I am PA only).
[img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img][/b]

Wait...Breyers is not safe? I have never seen the "may contains" on the ice cream label, and we have vanilla in our house all of the time.

Quote:Originally posted by CorinneM1:
[b] Wait...Breyers is not safe? I have never seen the "may contains" on the ice cream label, and we have vanilla in our house all of the time.
[/b]

Hi Corrine,

I should mention that I am in Canada and I am talking about the ice cream manufactured in Canada by Breyers. It contains the 'may contain peanuts' warning.

However, I consider Breyer's vanilla to be safe for me even with the warning, as they have very strict cleaning procedures in the facility, and they also run the vanilla ice cream first in the day, prior to the other flavours.

So my info (the allergy warning on Breyer's ice cream) is Canada specific. I have no knowledge of Breyer's USA.

Quote:Originally posted by jtolpin:
[b]You know im getting old, when I lose my train of thought like THAT. I should just delete this post, but I do want to say thanks for the insights!
[/b]

You're welcome Jason..

p.s. I lose my train of thoughts all the time too. [img]http://uumor.pair.com/nutalle2/peanutallergy/tongue.gif[/img]

Cynde,
I'm sorry to hear about your son's accidental exposures. I think this can happen to any of us no matter whether we have tight or loose comfort zones.

Erik,
From what you describe, I am curious as to why you consider yourself to have a looser comfort zone. It sounds like you may have a few years ago, but from what you said, it actually sounds like a pretty tight comfort zone. (Unless I am misreading it, it sounds like you don't usually eat "may contains" or baked goods as a rule but only if you have checked it out beforehand) which is similar to my comfort zone).

attlun,
Even with your tight comfort zone, you still have experienced reactions, so that would go against my "theory". Were they accidental exposures or were they from a food that was supposed to be "safe"?

[This message has been edited by Mom2Four (edited April 15, 2004).]

Mom2Four, We have a very tight comfort zone, no "May contains, no "manufactured in or on equipment", she has no baked goods I have not made myself.
So I do consider that very tight.

DD has had the first anaphylactic reaction in Dec. and diagnosed as PA/TNA, all legumes and peas, she had a contact reaction in January(hives), two contact reactions in February, first one(hives)second one(hives and facial swelling)required epinephrine, and two contact reactions in March(hives). I say contact because she did not eat anything she had not had before, so I attribute it to something she came in contact with.

So for us the theory "lax comfort zone equals more reactions" does not hold true.

------------------
Alicia, mom to:
Edward-21 years-EA,dog, cat,sulfa drugs
Cody-8 years- EA,dog,cat,mosquito
Shaylyn-4 years-PA/TNA,all legumes,peas,dog,cat,Amoxicillian,Zithromax,Asthma

Quote:Originally posted by Mom2Four:
[b]Erik,
From what you describe, I am curious as to why you consider yourself to have a looser comfort zone. It sounds like you may have a few years ago, but from what you said, it actually sounds like a pretty tight comfort zone. (Unless I am misreading it, it sounds like you don't usually eat "may contains" or baked goods as a rule but only if you have checked it out beforehand) which is similar to my comfort zone). [/b]

HI Mom2Four,

Personally, I don't feel as if I have a "loose comfort zone". I consider it a tight comfort zone.

But when I compare it with many people who post at PA.COM, that is when I consider it "loose" (by comparison).

As an example, I read many postings about people who:

- don't go to fast food restaurants
- don't go to any restaurants
- don't allow 'may contains' in their environment
- don't go to movie theatres/bopwling alleys/etc

So compared to some people at PA.COM, my comfort zone is not tight. I eat products that say "may contain tree nuts" which many PA people will not do (I am not allergic to tree nuts).

But you are correct - I do not eat any baked goods/desserts unless they are made in a peanut-free bakery, I do not eat 'may contains' except on the 'rare occasion' when I have researched it and feel totally safe, I do not eat at Thai restaurants, I do not eat sandwiches/toast in restaurants that serve peanut butter sandwiches..

hmm.. you know, maybe my comfort zone is not loose at all! I guess it is really hard to define it.. I am probably in the "middle of the range".. not too strict.. not too loose.

[img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

We have an extemely tight comfort zone because Ben has multiple food allergies. He only eats foods that I make, we even pack a lunchbox for him to take on the rare occasions we eat out. It is statistically very likely that he will outgrow some or all of his allergies other then peanuts and I will be able to have a normal comfort zone. In the meantime I give the appearance of being a crazy over-the-top unbalanced OCD case.

Mom2Four, great question! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

My PA son has had five reactions to-date, three of which were anaphylactic.

First one, okay, diagnosis of PA.

Second one, didn't have the "comfort zone" I have in place now (this was 6 years ago).

Third one, had the "comfort zone" in place, but sh** happened. Denial on his Father's part, not enough information, etc. My son almost died.

Fourth one, cross-contamination, two hives only. What I considered to be a well labeled cake mix. Posted about it here and will never buy the cake mix again.

Fifth reaction, anaphylactic to residue at school. Could not control it. Could not see it. Had nothing to do with our comfort zone because his school is not "peanut free", only his classroom. Something totally not within my/our control.

His first anaphylactic reaction (second reaction), *may* or may not have been because of my lack of a comfort zone (we just didn't let Jesse eat any peanut products), but, truth in fact was, I had told the neighbour's he was PA and he ate pb on toast while in their home.

I actually think my comfort zone is pretty tight, although I don't wipe down surfaces. We do have a peanut/tree nut free home (my son is PA only) and I do not allow him to eat "may contains" or "made ins". In fact, it is rarely that I would eat a "may contain" product myself or let my daughter eat one, just because of my son. They are never in our home and the only time that anyone in the family (other than my son) might consume a "may contain" is when Jess is not with us.

I do not eat peanut products and I do not eat tree nuts.

No, the second reaction, *possibly* due to comfort zone, but not really, the third reaction, really was a sh** happens one (sorry for the language) and the fourth and fifth, totally out of our control.

Great question. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

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Quote:Originally posted by Alternative to Mainstream:
[b]I actually think my comfort zone is pretty tight, although I don't wipe down surfaces. [/b]

I don't wipe down surfaces either... I have never done that (one reason I think my comfrt zone is a bit looser than many, plus I do have 'may contains' in my home that guests eat) [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

What complicates matters, IMO, is that some people with loose comfort zones treat asthma attacks as a separate condition than PA, when an asthma attack is a PA symptom in itself. People dealing with PA that I've met (again from my own experiences, IMO) don't even remotely think that the two may be interrelated.

Kind of a difficult question to ask when perspectives are so different.

You're probably right, ryan's mom, about so many other factors coming into play. It seems that those with asthma and/or allergies to foods in addition to peanut, complicates things. Erik and Cindy, we have never wiped down anything either and we do pretty much exactly what you do Erik in all other situations with the exception of eating "may contain tree nuts". Although my son is only allergic to peanuts and not tree nuts, I feel that the risk of cross-contamination would be high since most nuts are processed with peanuts (so our allergist tells us).

From those who have posted their experiences, it would appear that if you are allergic to peanuts only, a tighter comfort zone would probably mean fewer reactoins. But if you have any other complicating factors (asthma, other food allergies etc.) my theory is out the window!!

Up until *very* recently, our comfort zones were pretty lax. We ordered bakery items - a lot. When at the local gourmet market, I'd always get my PA daughter a cookie, and order her birthday cakes there. They also make tons of peanuty items. We have always eaten in restaurants WITHOUT asking ingredients. Gourmet icecream shops - used to frequent them. Given her handfuls of M&Ms. Icecream that we found out later was a MAY CONTAIN brand. Etc.
She is not ever out of our care though or away from an EPI Pen. Not ever...
Her *one* reaction was from holding hands with a cousin who had eaten a peanut butter sandwich 30-45 minutes prior, and who had been 'washed down.' My daughter rubbed her eyes, and her eyes swelled. No hives, no anaphylaxis, etc.
She is considered Class 6 (we just found that out) on RAST and 4+ on skin. Still we've never had a serious reaction in terms of collapse, breathing problems, etc. Her eyes swelling was a serious reaction externally though.

Hi StaceyK:
I'm just curious when you say your comfort zone was pretty lax "up to very recently". Does this mean that you have now tightened your comfort zone and that you don't do some of those things that you mentioned any more? If so, is it because of the one reaction or for some other reason?

ryan's mom, when I did have a "loose" comfort zone (I don't consider my comfort zone loose now at all, except that I don't wipe surfaces down), I didn't connect Jesse's two asthma attacks with PA. They were separate things for me. It was only within the last couple of months that a lightbulb went off and I thought hey, wait a minute, maybe those asthma attacks were PA related.

Of course, that was because, two months ago, Jesse hadn't had an asthma attack for six years. I have considered his asthma well controlled with the exception that it does flare-up during a cold/virus.

Then, this week hit and he's back in hospital again for breathing treatments and close to admission.

However, since the previous two asthma attacks had finally struck me as possibly being PA related, six years later (and therefore unable to tell because I can't say for sure what was around Jess or what wasn't peanut wise), I was able to look at this week and question whether it was PA related -the asthma flare-up. To the best of my knowledge, it wasn't. It is separate and now another journey I have to start again with him (and with some wonderful advice and information I received in Off Topic).

I think it may be something as simple as changing his inhaled steroid med - something that we have never done.

But no, it was only within the last two months that it even dawned on me that his two asthma attacks, within a year after PA diagnosis, may have been PA related. To tell the truth, we had NO comfort zone whatsoever except that Jesse wasn't allowed to eat peanut products.

After he had his first anaphylactic reaction, I put into place basically the same comfort zone I have to this day and I truly believe it is not lax, that it is fairly tight.

Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

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I found this very interesting I guess because I am trying to find a comfort zone. Yesterday while shopping I bought almonds for a salad which I know my 15 month old wont eat. I have my sister visiting so I also got 2 other products he cant eat because of the milk in them. At 15 months although he doesnt really notice yet that he isnt allowed something.. he picks things up all over the place. I guess I am trying to find a comfort zone. I felt guilty about buying and planning to eat things that everyone cant eat. When we have gone to restaurants or to peoples houses lately I watch him like a hawk. I hate this feeling.

Back when dinosaurs roamed the earth and we didn't have internet access, I thought I had a tight comfort zone. After all, I followed our allergists advice and "Kept him away from peanuts". I read ingredients (this was also before manufacturers voluntarily labeled for "may contain", etc.) and kept my son away from anything that was an [b]obvious[/b] risk. He was contstantly having mystery reactions. They never required the epipen, but rather involved lots of hives and croup.

Fast forward to when we got internet access and I found this site. I started calling manufacturers, became conscious of cross-contamination, and so on. He went several years before having two reactions in this past year - one from a cookie that is absolutely supposed to be safe, the other airborne.

He eats no "may contains", no "made in a facility that" and no ice cream besides Carvel or Mr. Softee soft-serve or what I make myself. (This is because despite the lack of warnings on the label and assurances that they have strict cleaning processes in place, he reacted to Haagen Dazs ice cream a few years ago.)

We have become quite tight in our comfort zone, and the benefit has been obvious.

Amy

Going Nuts, I think I have a fairly tight comfort zone myself (although I haven't felt that way in this thread for some reason and it's making me uncomfortable [img]http://uumor.pair.com/nutalle2/peanutallergy/frown.gif[/img] ), but here's a question I have for you (and anyone else really).

Even if you feel you have a tight comfort zone, do you have a "sh** happens" clause in there in the back of your mind?

The "sh** happens" clause I was discussing within the last couple of weeks at a seminar/course thing that involved some discussion of goals. The woman doing the course had very specific goals for her life and me being somewhat older than her, I asked her if she had a "sh** happens" clause because really, when I was her age, I was very much like her. Then, "sh** happened" that was out of my control.

That's the point with a "sh** happens" clause - it's stuff that's out of your control.

So, my comfort zone, which I do consider tight, except for not wiping things done, I now understand also has a "sh** happens" clause in it (can't think of a *nicer* way to say it right now, perhaps someone else can).

Jesse had the two hive only reaction to a Duncan Hines cake mix. It is labeled well. I called the company and they maintained that there were no peanuts/nuts in the facility. But, I posted about it here and learned that many Canadian members don't trust Duncan Hines. So, I simply don't buy it anymore.

Then, last year with his anaphylactic reaction to residue at school, again, another example of the "sh** happens" clause, for me. Could not control it. Could not see it coming. Could not prevent it as long as he was attending a school that was not "peanut free" (and even then, I don't have that "false sense of security b/s so probably not even preventable 100% in a "peanut free" school).

Something totally out of our control that is going to happen regardless of how tight our comfort zone is.

I'm not saying that our comfort zones *shouldn't* be tight. Mine is the way it is for what I believe a very good reason - my child has almost died. On the other hand, the not wiping down of surfaces, etc. is because I'm still trying to lead what would be in my mind's eye, a *normal* life, although there are MANY reasons nowadays to be wiping down surfaces. And I certainly wouldn't think that anyone who did wipe down surfaces wasn't leading a *normal* life for them.

I never question other people's comfort zones and am certainly not going to begin to now (I do question other people's comfort zones in *real* life, but I question them here, not with the person).

But, I'm just wondering, if despite your tight comfort zone (and yes, I loved your prehistoric days analogy - same thing here), if you have a "sh** happens" clause in the back of your head whereby if your son did have a reaction that was out of your control, you would recognize that it was separate from your comfort zone.

That's why I'm not clear a comfort zone does have something to do with the number of reactions. I believe it certainly does help, but then "sh** happens".

Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

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Hi Amy,

In Canada, Haagen Das has a peanut allergy alert on the packaging for all of its products, so it is a good idea to avoid their products. I wonder why they do not have this warning in the USA, as I have read several people posting at PA.Com about reactions to Haagen Das ice cream (maybe it is because Nestle Canada manufactures Haagen Das ice cream in Canada, and they are a very allergy aware company).

Mom2Four, We were more lax because of a few reasons. One, I was in denial. VERY out of character for me. I am usually sure that disaster will strike and plan accordingly (I am almost OCD about most things...) The only thing I can say to explain it is denial. Two, up until recently, we had heard that her RAST was zero and her skin test had gone from 4+ to 2. So I don't think we actually really 'believed' in her allergy or that it was serious. Three, we were somewhat uneducated about all of the may contains, etc., because of the denial (we didn't seek out to be educated.) Well, her allergist has since said, oops, she wasn't zero before on RAST, she was 5, (we were told wrong due to a file mixup) and now she is 6... very allergic, if it can be qualified that way, and we have done a lot of self-educating and gone to seminars, and spoken with other PAs, and read this site. So now we feel we were perhaps extremely lucky that she never reacted - or maybe she is very allergic but still not prone to anaphylaxis (I believe that is a possibility).

Hi, Our comfort zone is very tight. Our son is 19 and away at college. His life is a bit small because of his PA but also by choice since he is a quiet intellectual kind of kid rather than a party kid.

He has had some big reactions over the years. One I gave him a candy that said peanut on the label. I just plain ordinary did not pay attention. My fault. He did ask me was it safe and I said yes!

The second was a cookie that was probably cross contaminated at the bakery. We had no business buying bakery cookies!

The third was airborne and he could not have predicted this one.

So see the pattern? The first two big reactions were our errors. We had no business getting him a bakery cookie even if he DID grow up on that cookie safely.

I thought I read the label on the candy, I did not. He trusted me. Big mistake on both parts.

So his two biggest reactions were mistakes on our part. His and ours.

That caused us to further tighten our comfort zones and no one has a problem with this so far. He eats nothing he is uncomfortable with, nothing unlabelled, no may contains, nothing in restaurants unless he sees the menu and talks to the staff.

Most of those around him at school know the story and respect his safety.

He will not eat in a restaurant that has peanut anything on the menu unless he specifically speaks to the staff about how to handle his food safely. He will not walk into the cafeteria at school on Thai food day or if he does accidentally, he leaves. He is too old to care about eating with friends. Most of his friends seek him out anyway so they eat together.

He's not paranoid or frightened. He knows what he has to do to stay alive. He is not happy about the situation but he accepts his lot.

So his two big reactions came from obvious mistakes on our part and we learned and moved on. We keep our home really tight as far as peanuts are concerned so he always has a safe haven.

Peggy

Hi everyone, I guess I am trying to find my comfort zone with relation to my ds (4). he is PA/TNA, milk is something he scored high on but never has had a serious reaction. We have been warned by the doctor to get him off dairy (which he pretty much is). He is off ice cream, milk, yougurt, cheese, butter, etc. Although he used to eat some of these.

we are strictly on no nut, or may contain diet he only eats items I bake, unless I feel certain there is no cross contamination. We do however eat in certain restaurants we probably shouldn't. Don't know why I seem to accept this but won't eat a cake baked by my sister.

On Sunday we are going to a birthday party at my siter's farm 50 minutes from any hospital. I am VERY uptight about this. I am taking his own food & cupcake. They do eat nuts in their house (although I know she will make sure none are eaten that day and clean very well)

The comfort zone thing with this is it's too far from a hospital. If they were in the city, I'm sure I would relax & let him eat the food and cake (which she assures me will have no nuts, cross contamination etc.)

Why would I relax in the city?? I know his airway could close off & he could die in minutes anyway. I don't even really understand my own comfort zones. so there we are [img]http://uumor.pair.com/nutalle2/peanutallergy/confused.gif[/img]

Linda

I have what I consider to be a fairly tight comfort zone. No pn or anything with any warning enters our house. I do not eat anything with pn in it, nor do any of my 4 children. I do very occasionally allow my 2 non-pa children to eat a may contain item (although not if the 2 pa are around and not at the house). My kindergarten daughter who is not pa refuses to eat pn snacks at school because we don't allow them at home (she won't even eat a may contain at school).

However, I don't feel that the tightness of your comfort zone neccessarily reflects on the number of reactions. I agree with Cindy's "clause".

Timmy has had so many reactions I've honestly lost count. He had (I think) 5 anaphalactic reactions in a little over a year, 4 of which we used the epi pen. He has had about 6-8 other reactions requiring a visit to the ER but not the epi pen.

Most of these reactions were contact- computer keyboard (anaphalactic), basketball (2 ER visits 4 days apart), bunny rabbit (ana.) didn't know he was allergic, residue on table at school (ana.), etc... If I remember right the only ingestions were from
a Chips Ahoy cookie (no warning), and Kellogg's Frosted Rice Krispee's (again no warning).

Stuff happens, no matter how hard you try to keep them safe!

My boys told me yesterday that they have decided that they are going to live together in a mansion when they grow up... Timmy and his honey (wife [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] ) in the downstairs and Robbie and his video games in the upstairs so that Robbie can help him read labels and stay safe. I almost cried when they told me their plans (they are 8 and 10).

Take Care,
Valerie

[This message has been edited by CVRTBB (edited April 16, 2004).]

Based on what I am reading, it seems most people would agree that eating products with a warning label would likely increase one's risk of a reaction. There are certainly many other factors that would also increase the risk including not having a peanut/nut safe school, but the "biggie" in my mind is the issue of "may contains". I know there are people who allow their children to eat "may contains" and I respect their right to make that decision. I guess I am just curious to know how they come to that decision (is it because they disagree that there is not an increased risk or is their some other reason?) Again, please don't misunderstand---I am not passing judgement on anyone, just merely trying to understand others' points of view.

Mom2Four, I don't allow my PA son to eat "may contains" or "made ins". As I posted somewhere in this thread, it's a rare occasion that I eat them myself or let my daughter eat them, and if we do, it is not in our peanut/nut free home.

But here's my thinking of why other people *may* let their children eat "may contains" - they've called the manufacturer and determined, for themselves, whether there is a real risk involved or whether the "may contain" warning is a CYA warning.

I know when I was researching sundae cups for my son's school, Good Humour-Breyer's had a sundae cup. I posted about it here. Their equipment was washed so thoroughly and they had such a regimen (regime really) to their production, i.e., vanilla at the beginning of the week, nut product things at the end of the week) that I really felt okay with their product. It really was quite a rigourous regime (I'll try to find the thread).

However, because they had the "may contain" warning on their product there was no way that I could buy the product for our family.

Knowing that *most* of our food is probably not made in a peanut/nut free facility, how does one figure out what food is "safe" to buy? Trusting who is doing the labeling (as erik posted above about Nestle making the Haagen Daaz ice cream, and thank-you, I didn't know they had a warning on their ice cream btw).

Philadelphia Cream Cheese does not have a warning on it. However, at the time that I finally figured out why other people weren't eating cream cheese here, it was made in the same plant, but on a different floor, as Kraft Peanut Butter (not clear if it still is, would have to check with Kraft again). So, is that okay?

Or, Mr. Christie's, which what they maintain is a concrete barrier between the two parts of the factory - the one that has nuts in it and the one that doesn't. They're the only "safe" line of crackers and cookies we have been able to consistently buy since my son's diagnosis 6 years ago. Are they truly okay?

So, it's almost a contradiction in terms, but once that "may contain" or "made in" label does go on something, we can't eat it.

Valerie, great to see your post because, I was speaking in another comfort zone thread this week I believe, about how after your child had had a reaction, I spoke with the school and Jesse was provided with his own keyboard/mouse. I hadn't done that. I remember how difficult it was for you to post about your child's reaction to the keyboard, yet, it was such an important post for me to read. Nothing had happened to Jesse at that point, at school, with the computer keyboard/mouse, but, my soul, by posting what you did, you may actually have helped something from happening. That is one of the things that I have definitely fine-tuned in my comfort zone and it was because of you, thank-you. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

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The Good Humour-Breyer's thread. Please note, it is OLD, so the information in it may or may not be correct as far as going out and buying any of their products. The point in posting it in this thread is to show how one manufacturer had a really *good* (IMHO) procedure in place where I would have bought their product (and other members did), but once that "may contain" label went on, I wasn't able to. So, was it a CYA label or would there still have been concerns about the product? I'll never know since I won't be purchasing it.

Again, please remember the thread is old, that's why I didn't re-raise it (thank heaven for Nutternomore who explained to a computer moron how to place a link in a thread so easily [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] ):-

[url="http://uumor.pair.com/nutalle2/peanutallergy/Forum11/HTML/000299.html"]http://uumor.pair.com/nutalle2/peanutallergy/Forum11/HTML/000299.html[/url]

Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

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Hi CVRTBB:
I'm sorry to hear about all the reactions your son has had. You're absolutely correct in that "stuff happens" no matter how hard we try to prevent it. I know I am being very simplistic in my thinking since everyone is different even in their sensitivity to the allergen. It sounds like in your son's case, he has had contact reactions so that obviously puts him at higher risk for reactions. However, that does not change the fact that if he also ate "may contains" he would be at an even higher risk for reactions, right?

Cindy, it makes sense to me that if people called about a "may contain" product and found it to be safe, they would still eat it. I'm just wondering if anyone eats "may contains" as a rule without calling. I would be curious to know if these people have more reactions than those of us who do not eat "may contains" (recognizing of course all other factors being equal).

I wonder if those with more reactions are the ones with tighter comfort zones? Perhaps they are super sensetive and react so easily, that dicatates the tight comfort zone.

Reaction history dicating the zone rather than the zone dictating the number of reactions. KWIM? That is where I see us heading with our dd. I allow a new thing here and there(not may contains, but a clear label and perhaps I have not called the manufacturer) as we go more years reaction free. becca

Quote:Originally posted by Alternative to Mainstream:
[b]

Even if you feel you have a tight comfort zone, do you have a "sh** happens" clause in there in the back of your mind?

[/b]

Yes, absolutely. The reaction he had to the supposedly safe cookie definitely falls into that category. I checked the website (which was very complete - McVitie's, btw), called the company who swore up and down it was safe, and he had a reaction. Who knows why? Someone else had posted that her DD had a reaction to the same cookie.

The airborne/contact reaction was due to my own complacency. Can't file that one under "sh** happens", just under my own stupidity. [img]http://uumor.pair.com/nutalle2/peanutallergy/rolleyes.gif[/img]

Amy

Mom2Four,
I guess I wasn't really specific. Our comfort zone wasn't always so small. We never have let ds eat anything with a warning, but would let him eat anything without one (except bakery goods), we were told his allergy wasn't "that bad".

The 1st reaction was his first contact with pb before we knew he was allergic.

2nd was accidental, he took a bite of an oatmeal cookie w/pb in it. This reaction was anaphylactic, and our comfort zone became much smaller. We don't let him eat anything unless we've checked up on it.

3rd reaction was we assume from pn residue contact.

Since our comfort zone has gotten "tighter" we haven't had any reactions except the contact one, which we couldn't have avoided unless we sit at home and never go anywhere.

------------------
Tina
Trevor age 2 -PA
Harmony age 1 -KNA
It's a BOY!!! due June 24, 2004

Going Nuts, thank-you for answering my question. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] I guess for me, it was something that was brought up in the class/seminar/whatever last week when we were talking about goal setting and I had to ask this relatively young woman if she had a "sh** happens" clause. Of course, then I bawled my eyes out all the way running errands on the T.T.C. because of the 15 years I did spend with specific goals and how then "sh** happened".

Someone, please, can think of another way of saying it.

Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

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Quote:Originally posted by becca:
[b]I wonder if those with more reactions are the ones with tighter comfort zones? Perhaps they are super sensetive and react so easily, that dicatates the tight comfort zone.

Reaction history dicating the zone rather than the zone dictating the number of reactions. KWIM?[/b]

Great point becca. I had been thinking the same thing. Over the last 2 years, we've allowed my dd to have 'may contain's for tree nuts (not peanuts) b/c she was only tested, and had reacted only to, peanuts.

We recently found out that she is a '2' on Cap Rast for most tree nuts. But, I'm still allowing her 'may contain's for tree nuts since she never had any reactions to them over the past 2 years of eating them.

However, for peanuts, we're middle of the road on the comfort zone. No may contains, no peanuts in the house, and we always check w/the manager at a restaurant. But my DH and I do eat may contains, and they are in a separate cupboard. And I do allow her to eat items that have a clear allergy warning that doesn't list nuts/peanuts, w/o calling the company.

She is almost 3. Her only 3 reactions so far have all be contact exposure, just a few hives that have been cleared up by benadryl.

But now that she's been Dxd with asthma recently, I'll be more aware that an episode could be PA related.

Great thread! I'd be interested to see more replies from less strict or more middle of the road comfort zones like mine.

Pamela

[This message has been edited by Driving Me Nutty (edited April 17, 2004).]

<<< I know there are people who allow their children to eat "may contains" and I respect their right to make that decision. >>>

I'm not sure if you misunderstood what I wrote, but to clarify, we DO NOT allow our 2 pa children to eat "may contains" and our 2 non-pa children only eat them occasionally when not around the 2 that are pa.

Cindy,
I'm so glad that you were able to get Jesse his own keyboard! I'm glad that something good came out of my posting about Timmy's reaction. He just had 2 a couple weeks ago from residue on a basketball four days apart...

Took my pa daughter to a girl scout tea party yesterday and found they were serving pbj sandwiches and pb cookies. If she were Timmy I would have turned tail and ran away, but she begged to stay and the chef gave her a safe alternative. I stuck to her like glue and she was fine. She sat between her leader and I and didn't go near where they were serving the food (we were sitting on a porch outside and most of the people were inside). I actually took her for a long walk to find a potty that wasn't contaminated with pb so we were gone most of the time that everyone was eating. I freaked out about the whole thing and wanted to leave, but because she has never had a pn reaction I was a little more amenable to letting her stay. Girl Scouts is sooooo different from Cub Scouts! The Cub Scout pack bends over backward to keep my son safe! They even had the cake for a banquet home made so that he could have some too. He was soooo excited! (His leaders are also EMT's... we are so blessed!)

Take Care,
Valerie