How Did PA Affect Your Day To-day?

Posted on: Thu, 12/14/2000 - 3:22pm
Anonymous's picture
Anonymous (not verified)

In our day-to-day lives, PA may not seem to affect us at all. Then, there are other days where it has a great impact on us, for whatever reason. Aside from visiting this site, how did PA affect your day to-day?

I'm speaking for Thursday. Of course, I visited the site first thing this morning.
I had my Pillsbury plan I wanted to post, which I did. I then called Pillsbury Canada to check the safety of certain products that are currently available in our stores. I checked on One-Step Brownies and the slice and bake holiday cookies. They are both imported from the U.S. and not considered "safe". However, they are not re-labeled when brought into Canada. With this information, I was back in here, posting it wherever I thought was necessary so people would know.

I realized that Jesse has a Christmas Party at school next week and these are potentially something another parent would "make" for the party. I called and left a message for his teacher to call me. When she did, I told her what products were not "safe" and asked her if she wanted to allow them into the classroom or not. She definitely did not because she considers her classroom a "peanut free zone" which it is. Tonight, in Jesse's knapsack was a notice about the offending products. Kudos to Jesse's teacher! This woman is simply wonderful!

I had many e-mails to answer to other PA parents. Although our discussion now is not limited to PA or may not even include PA, our connection was originally made because of PA.
It was with great pleasure that I was able to contact each person I did to-day.

I sent a package to a PA parent in California with some "safe" candy from Trebor-Allan. I was sending her Jesse's school picture but decided to include the candy for her daughter too.

I had to fill out Jesse's choices for Winter Activities for the school to-day. Aside from the usual decision making involved with this, I also had to write down very clear instructions, because his three choices included leaving the school premises. I had to be clear that both Epi-pens were to go with him and that he have a designated seat on the bus that was cleaned just before he got on it. For me, filling out the form was not as "simple" as for other parents. It had to have very clear instructions re PA. Also, last year, the school decided at the last minute (the night before) that they could not guarantee his safety at his first, second or third choices and we had to opt for a totally different one. This year I'm hoping the choices will be considered "safe" by the school. Cross-country skiing is his 2nd choice and in the description for it, it says that there will be a snack served. So, of course, I had to write that if Jesse had to go with his 2nd choice, the school would have to ensure that all students attending the 2nd choice were provided with a "peanut free" snack.

And, I think, finally, Jesse had his picture taken to-day by the woman that is writing the article for our local newspaper re PA. I had had to speak with him before I could tell her whether it was okay for him to have his picture taken or not as he does not like unwanted attention drawn to him. I explained the possible consequences of having his picture in the paper, i.e., recognition because of his allergy, etc. and he was okay with it. I also explained to him that this article would help other people understand PA and maybe help other children with PA.

Most importantly I think, I was able to tell my just turned 5 year old son tonight that I was very proud of him and his decision to have his picture taken to-day. He seemed very proud himself and for that, I am thankful.

I am also thankful for this board for being able to share this PA-packed day, and especially that important moment, with whoever reads this post.

What about everyone else? This question isn't solely directed at positive aspects of PA affecting our day. I just happened to have a "good" day. Had it been the day before, well....

Just wondering, as always, and I'm sorry, I couldn't restrain myself for longer than a week before I asked another question! Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

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[This message has been edited by Cindy Spowart Cook (edited December 15, 2000).]

Posted on: Thu, 12/14/2000 - 11:38pm
Head Cook's picture
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Joined: 11/19/2000 - 09:00

This whole allergy thing has shaped my life in a way only you out there could understand. I call myself Head Cook because I spend my life in the kitchen cooking safe food with the phone hanging off my ear to some customer service person.. We have pn and soy allergy, and while pn is scarier, the soy allergy is much more difficult and it is a serious one (RAST 4+). And my other son is lactose intolerant. So yes, it has shaped my life, and after doing it for 9 years I am worn out and am anxious to turn some responsibility over to my sons. But not at the risk of something happening.
Yes this allergy stuff is more life altering than anyone, but people doing it, could imagine.

Posted on: Fri, 12/15/2000 - 12:05am
Yankee's picture
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Joined: 03/08/2000 - 09:00

I live my life a lot more carefully now that I know I have PA. It's something that I think about every day, because it's necessary for survival. It's a pain in the butt a lot of times, but when I hear of the problems that some people have in this world (cancer, paralysis, accidents, whatever) I feel extremely lucky to be a healthy person. The allergy also affects my family, particularly my husband-to-be as he can only eat peanut prducts when I am away on extended trips (and he LOVES peanuts!). It also dictates where we go to eat when we go out to dinner. I almost hate trying new restaurants out of fear, but I refuse to live my life scared. I try to look at the bright side, which is I love to eat, and I would probably be fifty pounds heavier if I could just eat whatever I wanted!

Posted on: Fri, 12/15/2000 - 12:48am
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Joined: 05/01/2000 - 09:00

It didn't. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Posted on: Fri, 12/15/2000 - 1:11am
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Joined: 10/12/2000 - 09:00

Cindy, I am replying to this topic because, today I was in school with Bobby to help him decorate gingerbread cookies.
It started off last week when the teacher changed the recipe so Bobby could enjoy & have these cookies.(which I thought it was very nice)
Then they called me with the decorations they would be using (M&M's). I then bought pez for the cookies(which are safe).
So it brings us to today-I went to class &
they moved his desk away from the other children so he wouldn't have any contact with the M&M's. All the children took a bite from the cookie & I started to cry because, I felt so bad he was seperated from the other children but, he was fine with it.(he completely understood).
One of his classmates asked, "Bobby why are you sitting way over there." Bobby replied,"I am allergic to peanuts, you know that." He didn't even care, he was being very silly about his reply.
Why do I get myself so upset? I guess because, I am his mother & I don't want him to feel different. I felt so bad the whole way home from his school-It didn't even effect him.
Just wanted to share this with you. Thanks for that question today because, I needed to let this out today.
Take Care.
Ronna

Posted on: Fri, 12/15/2000 - 4:23am
Anonymous's picture
Anonymous (not verified)

Okay, I think part of what might bother people about my participation in discussions is that when I raise a thread-starter question, I will often come back in, like I am now and raise more questions for the people that posted a reply. Perhaps people simply want to post their reply and then be left alone. Having said that, I wanted to ask a few questions as I found all of the posts quite thought provoking.
Head Cook, I completely empathize with you.
What I was wondering, when you contact manufacturers on what seems like a really regular basis, do you write any of the information down for future reference or do you feel the need to re-check with the manufacturer again and again? Do you ever post your information here under Manufacturers? Do you find the Manufacturers section and the posts within reduce any of the "phone work" you have to do?
When I feel the need to call a manufacturer, which is not often, when I get the answer from them I will come in and post the information here. I am hoping that it will save someone else from having to make the same call I just made. But then I have pointed out in another thread that perhaps if we all called the same company and received 10 different customer service representatives we would all receive 10 different answers to the same question. I guess my wondering is two-fold, do the posts under Manufacturers make any difference to anyone in lessening their need to call the same manufacturer or do we each feel we have to get our own answers?
Yankee, are you recently diagnosed with PA?
It sounded as if it was something you had not grown up with.
MKRuby, if I had answered this question to-day, I would have answered the same as you did. However, I am wondering if this would be your answer every day. Do you have PA so under control and the situations at your children's schools and with manufacturers and everything so well controlled (and I'm not clear that's the word I'm really searching for) that PA is not a concern for you on a day-to-day basis and your answer would remain the same each day. Do you know what I'm trying to ask? Again, my answer, if speaking about to-day, would be the same as yours.
Caring Mom, if it makes you feel any better that you were crying about Bobby, so was I and he's not my child! It's obvious that Bobby is not in a "peanut free" classroom right? Is there any way that you could have nixed the bringing in of the M & M's (hindsight is a wonderful thing)? I'm trying to think of a good substitute, but even on Jesse's Ziploc bags for school, there is a picture of a cookie with M & M's on them.
There's no mistaking them, they are plumper than Canadian Smarties.
As you mentioned, it is you that was bothered by what happened to-day and not Bobby. I've found this out with Jesse too. So often, our children understand and deal with PA situations better than we do. That being said, however, I am NOT negating your right to cry and you not wanting Bobby to feel any differently than the other children. That's exactly where I come from with this. I, for whatever reason, felt really left out as a child and had very low self esteem. My husband was the same. So, it was our aim to ensure that our child did not feel this way in life. What do we get? PA. How can your child not feel differently than other children when they can't even eat the same things as other children. Okay, I also realize that that are far more serious things than PA, but I would like to remind everyone that we are on a PA site.
I'm sorry, I found your post really heart breaking so I'm not going to be much help to you at all. My only consolation for you would be that at least Bobby was okay with it. And while my heart often breaks for Jesse, he is usually okay with whatever the situation is too. It's our hearts that break and our children are okay.
The next possible time for children making cookies and decorating them, when could it be for Bobby? Valentine's Day is the next one that hits us, party wise at school. What I would like to suggest is that you sign Bobby up in the Canadian Smarties thread and get some Smarties that you can safely substitute for M & M's should they be chosen as the decoration again. I know that M & M's look great on the package on the Ziploc bag and I'm sure they are a great decoration. But, aside from not being as plump, I think Canadian Smarties would look just as great.
In fact, that's what I'm planning to use in my oatmeal chocolate chip muffins next week for Jesse's Christmas party rather than chocolate chips. We can get "safe" green and red coloured Christmas ones.
I'm really glad that you felt comfortable enough to come into this thread and post what happened to-day. I know exactly how you're feeling. Actually, Caring Mom, my heart is really feeling what you're going through right now and you'll have me in tears again!
I don't think anyone can find fault with us for feeling the way we do, especially given the fact that our children aren't "poor me, I can't have that". Our children are aware and do understand and do feel okay. It's just that we, as their parents, feel badly. And I don't think we can have those feelings negated. If our children felt the same as we did, then perhaps some would suggest we had a problem.
At any rate, I am sorry this post was terribly long again and I'm going to have people up in arms and angry all over again.
I can't help it. Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
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Posted on: Fri, 12/15/2000 - 4:31am
Anonymous's picture
Anonymous (not verified)

Many days, it doesn't seem to affect it at all (mostly because we plan ahead and are so used to it). But on others, it really raises the tension level, especially when plans have to change abruptly. Example - the day before yesterday I spent the day at the hospital with my mom (long story - she's fine, but the sandwich generation thing is difficult!), and my PA son had to go to a friend's house after school. I hadn't planned on this, so I didn't send a safe snack. I was a wreck, trying to find a working phone to reach this mom to discuss food. (Like I wasn't already stressed enough!) I know that this could all be a lot worse, but it's the little stuff like this that eats away at you over time.

Posted on: Fri, 12/15/2000 - 4:40am
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Joined: 04/12/2002 - 09:00

With the holidays approaching, PA seems to be more of an issue right now. I was up at my son's school by 7:15 this morning to talk to the teacher about an activity they were going to do. They are making some holiday food next week and I found out by accident that they were planning to use mixed nuts in one of the recipes. Yesterday they made candy (noone checked with me)and of course it was using chocolate that my son cannot have. They also made a birthday cake this week for the teacher and used almond oil in the recipe! I am at the school all the time (I substitute teach almost daily)and they still didn't think to check with me. I have on many occasions asked for them to let me know ahead of time and I will be happy to purchase any ingredients that they need. When I bring it to their attention, they are willing to change plans but it has really been a challenge this year trying to get them to think of it up front. I think I need to get some literature to them to reinforce the severity of the situation.

Posted on: Fri, 12/15/2000 - 5:03am
Anonymous's picture
Anonymous (not verified)

PattyR, WHAT????? Is the school aware of your son's PA? He obviously does not have a "peanut free" classroom, right? Okay, this one I really don't get. Are there no guidelines in place, at all, to ensure your son's safety while he is at school? What grade is he in?
You just mentioned three or four or maybe even five incidents over the past couple of weeks that involved some kind of peanut or nut product. I cannot believe it. Is it because my son has a "peanut free" classroom that I don't understand the total lack of concern that other PA parents are faced with on a daily basis when sending their child to school?
I know a couple of months ago, I posted under schools about some literature to present at a Parents' Night. If you could find that thread, not because it's mine, but it had some REALLY good links in it for user-friendly information. When I deal with the school, I always give them literature from [url="http://www.oma.org"]www.oma.org[/url] (there's one on PA and one on Anaphylaxis). It's not as non-PA parent friendly as other literature, but it really gets the point across well and seems more "formal" shall we say, to be given to people at the school.
I'm sorry, I'm still trying to figure out why, especially given the fact that you're there almost all the time anyway, that you would not be given a list to pre-approve before anything was done in your child's class. Are they simply willing to have a reaction happen and then deal with it? Somehow I just thought that even if there was no school board policy in place, your child still had the right to be safe in their class and if the school and teacher is aware of his PA, they would be aware enough to check these things out with the parent of the child. Wow, do I need my eyes opened!
Amy Frankel, I totally agree with you. We probably go through most days not really dealing with PA because we have our environment controlled or our days planned out. It's the unexpected little things along the way and I truly believe these little things add up and add up and if we don't deal with them somehow (even if it means coming to this board to vent), our heads will eventually explode and we will be of no use to ourselves or our PA and other children!
I am very interested in receiving the parental stress survey one person posting here was sending me (and anyone else that asked for it). It should be here any day now and I am anxious to see their results when the survey is completed.
Last night, when going over the Winter Activities list with my husband, who is going to participate with my son, he thought that maybe I had worded the instructions that were specific to Jesse participating because he is PA a bit too strongly. When you and your partner even have a slight disagreement re how PA should be handled, automatic stress increase. I just looked at him and told him very clearly that the school had to be given these instructions to ensure Jesse's safety and that I actually found my instructions weren't as severe as they could have been.
I was simply clear and straightforward. I posted in my thread-starter what I had to put down on the Winter Activity Form. I know exactly where my husband was coming from, he doesn't like to ruffle any feathers at any cost, but when reminded that the cost could be his son's life in this particular instance, he let it go. But a moment of PA related stress between us there last night, definitely.
Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
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Posted on: Fri, 12/15/2000 - 5:24am
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Joined: 03/08/2000 - 09:00

Cindy-
I now know that I was PA all my life, but I had no real way of knowing since I always despised the mere smell of peanuts. However, I can now trace frequent stomachaches, indigestion, hives and vomiting to times I ate cross-contaminated foods (i.e plain m&m's, chinese food). As I got older the symptoms of my allergy got progressively worse, and now it's to the point where I go into anaphylactic shock.

Posted on: Fri, 12/15/2000 - 6:47am
Anonymous's picture
Anonymous (not verified)

Yankee, thank-you for your answer. It's funny, but I've hated pb since I was a child and I end up with a PA child!
The M & M's, wow! To-day! Jesse was talking about school and he said that one of the kids had plain M & M's in the class yesterday and was allowed to keep them in the "peanut free" classroom. Apparently the packaging was sent in with them. I have NEVER even checked the labeling on a package of plain M & M's because I simply assumed that they would be labeled and have a high risk of cross-contamination.
Now, I have to bloody check to see if plain M & M's, in Canada are labeled "may contain".
If they are, this opens up a whole other can of words at Jesse's school. "May contain" should not be allowed in a "peanut free" classroom and obviously if one parent thinks that "may contain" is okay to send in, then how many others will. So, as I said, I do have to check an actual package myself and see how they are labeled. If it is simply a cross-contamination issue that I have as a PA parent, it is quite different than a high risk of cross-contamination to the point of properly labeling and it being brought into the classroom may or may be of concern to me after I personally go out and check a label (and with two screaming beejeebees in tow with me, just grand!). I don't want another "issue" at the school. I'm not even going to go there until I can confirm if the bloody things are labeled or not. Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
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