What do You Feel Comfortable Sharing Only with Another PA Parent/Person?

I would have to say the last three. I went through the list and asked myself "Would I talk to my mom about ____?" Only the last 3 did I say no. I don't think she could possibly understand why 'it's such a big deal' to worry about whether or not you have the meds with you for example. Actually this popped up tonight, we went out to eat at the local Pizza Parlor, and as Mom and I were finishing getting the kids rounded up, she asked me if I was ready. I replied with "Just a sec, let me grab the benadryl." She gave one of those little sighs that says 'You are being so ridiculus, but I'm not going to say anything...' Maybe she will understand and therefore be more receptive/supportive when she finally 'gets it', but for now at least, she views Mike and I as overreactive, extremist parents. And our comfort zone has been and still is much more lax than most! LOL

From my point of view, I'm more than happy to share information & worries with *anyone* : the more people who know & understand, the safer it will be for all PA (etc.) sufferers and their families. I still get family members (they seem to be the worst!) saying "but you can eat that - there's no nuts in that" and I have to remind them *again* of issues like by-products & cross-contamination. They seem to think that if I take an antihistamine before a meal, everything will be OK. Perhaps it may be, if only a small trace of nut allergen was at issue, but I'm not prepared to take the risk...

The more that the problems & dangers encountered by sufferers are brought home to others, the safer life will be. Food labelling, food hygiene, dangers of cross-contamination, educating others that "little Johnny" eating peanut treats in the same room *can* affect the PA sufferer ... When they understand the potential seriousness - which is sometimes, unfortunately, only after witnessing an attack - then progress can be made. Until then : yes, life *is* full of worries. It *does* help to talk to those who understand. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Cindy this is the thread I think I have been waiting for. I have been pretty lucky because my family discusses anything. In fact sometimes we talk to much. Well this one thing that always bothered me about a trip to the hospital with chris I never told anyone. I now feel that this is the tread to tell it on. When he had a reaction one time he lost so much oxygen and the doctor told me he would not even tell me the number because it was so bad. I did know it was less than 80. I was alway concerned that Christopher lost so much oxygen that he may become handicap. Well thank god it did not happen,but at the time I was so scared. I never told anyone how I felt because I have always been afraid of being laughed at. Plus I think i was trying to pretend it wasn't as bad as it was. Well I cann't talk about it anymore today. Claire

Matt's Mom, wait 'til your Mom hears "I'm ready once I get the Epi-pen". Hmm. I'm still trying to figure her reaction out, especially since it was her, was it not, that originally thought Matt was allergic? Given the information you've posted about his reactions, I don't think you and your husband are overreacting and I honestly do feel like sending you an Epi-pen until you get one!

Nick, I know exactly what you were saying. We should be talking about this with everyone to get the information out there. But there are so many little things that you would never think of sharing with another person unless they are a parent of a PA person or a PA person themselves. No matter how informed other people are about PA, I don't think they can actually "get it" 'til they walk in our shoes. So, there are a lot of things that we, as parents, or sufferers, simply do not discuss with other people because they won't "get it" or they would find it a strange topic of conversation.

Claire, I understand why you had to complete your post. Please remember Chris is okay and you are a good Mom!

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

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Claire,
Something similar happened to my son (his was not from the peanut allergy, but he had a bad reaction to codeine after surgery when he was only 3 months old. He stopped breathing and turned blue ). It is terrifying and I had the same concerns that you had. I was worried about brain damage and didn't even want to ask the question b/c I didn't want to hear the answer if it was bad. My son is fine, but you never forget something like that. Best wishes.

Sandra Y Thank you so much for telling me about your son. I feel a lot better that this "so called secret" got out. It is something that I never told anyone because I was afraid they would think I was looking for a poor me story. I am glad to that your child is fine. Thank you Claire

Cindy-- yes, Mom was the one to suggest he was allergic to begin with, but she did not/does not understand the severity of the allergy apparently. I know she will adhere to our rules, but right now I don't think she agrees with them. That in itself could be a problem, because I'm worried that she, Dad, or my 19yo brother are saying things like "they're paranoid" or "it's NOT that big of a deal" etc to my two younger brothers (7 and 8), and I worry that because they are hearing other adults say these things, they will think it's 'ok' to give Matt a piece of chocolate or something without first clearing it through one of us. Once we have 'hard proof' that Matt is allergic and that PA IS a serious allergy, then I'm sure she WILL agree with all the measures we are putting into place, but in the meantime things are a little worrisome. =(

Claire-- I would have been scared of the same thing!! I've never encountered this situation with my kids, but I do know it's possible, and I've been without oxygen for long periods of time myself, so the thought really scares me that my little ones may go through the same thing only not fare as well as I have. It's good that you were finally able to 'get that off your chest'. I'm so glad Chris turned out to not have any lingering effects due to the loss of oxygen!

Matt's Mom, 2 questions, one of which may actually be appropriate to the title of this thread. Deep down inside, don't you already know the answer re Matt's allergy? Do YOU think that Matt is allergic to peanuts? Also, when is your appointment where you can have this confirmed?

Perhaps your Mom is one of the types of people that needs to hear it from a doctor before it is "truth" and that is okay, but from what I've read of Matt's reactions, I would say that he is PA. Of course, I would feel great if you learned that he wasn't, but then I'd be questioning what he did react to so severely.

It wasn't until my son had his 1st anaphylactic reaction (his 2nd reaction) that we implemented a "no peanut zone" for our home. I remember clearly keeping the Hallowe'en candy, just not letting him have it and I also remember a bag of peanuts that we received for Christmas. I guess we tightened up our "comfort zone" after his first anaphylactic reaction and treatment with an Epi-pen. Someone had started a thread about the things they remember and I guess I should have included those thoughts in there.

Anyway, I don't mean to single you out in any way, I'm just really concerned about you, as I've told you before, I'd send you an Epi-pen 'til you got one! Please let us all know when Matt will be "confirmed" (or "unconfirmed" for that matter). Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

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Fears - definitely! Including, of course, the "ultimate fear" and then our fear of the next reaction.

Yesterday, my PA son had a field trip. He was only going to be gone from the school for three hours. When he was leaving the school, his teacher tapped her knapsack which is her signal to me that she has all of Jesse's meds with her (the extra Epi-pen and Ventolin). He also sat beside her on the school bus. I watched and waved until they pulled away with his bright, shining, happy smile looking at me through, I must say, a very dirty bus window! I had gone up and wiped off enough of the window so I could see his face properly! At any rate, all of us have different fears, as parents, when our children go on field trips - will there be an accident, etc. But, with PA parents, I still believe it is different.

I thought of coming home and starting a new thread or maybe finding an old one of mine about a field trip he had been on last year and simply posting in that. I basically stayed off the computer and the phone until I knew he would safely be back at school. But, my thought is always, at the back of my head, that despite that wonderful smiling face and his enthusiastic waving, that the next time I'll be seeing him is in the hospital. Yes, we take every precaution, but I also know the carelessness of the school bus drivers (not all of them) when it comes to cleanliness of the buses (I wish we had the P.E.I. policy when it comes to this one in particular).

I decided to call my Mom. She said, Oh, I was always like that whenever you kids went on a field trip. Then I said, but no, Mom, this is why I'm even worse. She got it, but she didn't. Do you know what I mean?

He got back safely, without incident, and had a wonderful time, as he did on both field trips last year.

Oh, I've also mentioned somewhere I this board that I'm not the Mom that would be asked to go along for field trips as Jesse is one of those children who would behave very differently (and not in a good way) if Mommy was there. I completely understand where his teacher is coming from without even having asked her. I simply know. So, I can't accompany him on field trips and had to let that kind of go.

Now, in all likelihood, it will probably be my non-PA daughter that I spend more of my life worrying about as she seems to be very accident prone - 5 stitches to her chin last week, but this was something again I felt I could only share with another PA parent, and since you can see from my other thread, I don't know any, so who do I share it with but you all! Best wishes!

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Cindy,

This is a great thread you've started. I was beginning to settle down about my DD's PA diagnosis. But then the other night I had a terrifying dream. Memories of it hang over my head like the grim reaper. I dreamed that someone fed my DD a peanut. She went into shock and I was racing around trying to find an epipen. When I finally found it, I was terrified to administer it, but did. Then I called 911. The ambulance came and took DD to the hospital. But then when DH and I drove to where the hospital was, the hospital wasn't there, and we couldn't find it. I woke in a cold sweat.

Does anyone else have horrifying nightmares that haunt you for days? I told DH about my dream, and he just said something like "This has been hard on you, hasn't it." My playgroup thinks that I stress out too much about this. This is definitely the only place I know where other people understand how I feel.

Amy

Triciamom, what an absolutely horrible dream! I had been fairly lucky, I hadn't dreamed about my PA son being in danger until I read about another person having a dream about their daughter a couple of months ago. Now, I've had a couple of dreams that were not pleasant, but nothing like yours. I am SO sorry.

I really believe that it is something that you can't share with anyone else except another PA parent because other parents even just don't "get it" and it's not their fault, they just simply can't. Sometimes I come in here and talk about stuff that I don't even mention to my husband. If you have a chance, I started a thread (what else is new?!) about if you treat your PA Child Differently than their Siblings and it mentioned a discussion between my husband and I. I believe it is under Living with PA. But, until that night, he wasn't even able to acknowledge that even in the back of his head.

Hopefully, it won't be a recurring dream. What I do when I have a bad dream, and this may not help, but I purposely get up, close the kids' doors, come downstairs and have a cigarette and glass of water to "break the cycle" of the dream. I'm only wondering about what you would do if you don't smoke. But, for the most part, this does break the cycle of even good dreams that I have but I know they're not going to continue so why lie there thinking about them.

What I really liked about your dream, if there is anything to like about the nightmare, is that you did give your daughter the Epi-pen! You did everything right! It was the hospital's fault in the end, for moving! Step by step, you did everything right! Kudos to that in a nightmare at least! Thanks for sharing this and I really hope it did help. 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 November 10, 2000).]

Cindy-- I'm going to answer the 2nd question first, because it's easier. lol Matt has an appt with the pediatrician this coming Thursday (16th). From there we'll ask to be referred to an allergist. I'm hoping that the ped will prescribe us an epipen then and there, so that I will feel more at ease taking Matt to the big Thanksgiving get together. My husband had a thought...he has a second cousin who is a doctor, and he thinks he would give a prescription for one if we can't get one before Thanksgiving otherwise, but I'm not sure our insurance would cover that, and we simply don't have the $$ to pay for it if it doesn't.

Now, I'll answer the first question, but it'll be long. =) Deep down do I know that Matt is allergic? I'm not sure if I know or not. I think his probs with FTT play a big part in this. When he was sooooo skinny and eating sooooo much I just KNEW there was something wrong. No matter what my mom said (yes, she questioned that whole thing too..even WITH the dr's diagnosis!), I just knew something wasn't right with him. But, we went to see the ped GI, ran a few tests, and everything came back completely normal. Then we started giving him solid foods and taking away the formula and he finally started gaining some weight. The whole mess really made me question myself and my 'gut feelings'. I knew there was something wrong almost immediately (gut feeling), had it proved right when three different drs diagnosed him as being FTT, but then I felt like my gut feelings were disproved when the tests all came back negative and he finally started gaining weight. Does that make sense?

Anyway, ever since then I've second, and even third-guessed myself. In regards to the PA, I saw him react twice. I can't actually remember seeing him put the pbj to his mouth the first time, but I know he did because at the time I remember the two of us (dh and I) trying to determine if it was the pbj or the soap...it's just been so long since I've thought about it, I can't 'see' him putting the pbj to his mouth anymore. I DO remember the way he looked afterwards. *shudder* =( The second time, I was watching him like a hawk and caught the swelling JUST as it was starting and gave the antihistamine. Well, now I can't remember just how swollen his face and hands had gotten at that point and now I find myself wondering "were they really swelling up? or did I just panic?". I DO remember the sneezing, runny nose, and watery eyes.

I guess what I'm trying to say is that I do know, but at the same time I'm constantly questioning my 'knowledge'. I'm afraid that he IS PA, and at the same time I'm afraid that he will test negative and my gut feelings will be wrong, that I'll turn out to be just another "overreactive mother who has nothing better to do with her time than worry". (that's a direct quote one of the nurses at our old drs said about me when we took Matt in weighing 11lb at 5mo, even though he was eating twice the amount as is considered normal.)

Told you it would be long! lol sorry bout that, but I couldn't figure out how to word things right, and this has REALLY been on my mind the last couple of weeks.

Matt's Mom, I'm sorry if you felt I had singled you out. Again, I am just SO concerned for you and Matt. At any rate, everything you said makes perfect sense to me, another PA parent!

I'm hoping that if you give the reaction information to the pediatrician he'll prescribe an Epi-pen (just in case). If he doesn't, let me know, because I will send you one 'til you get to the bloody allergist! I suppose I shouldn't say such things! I just know that where I am, it took us at least two months to get into the allergist, maybe three, I can't remember now. If it's quicker there, great, but I'm really worried about you not having an Epi-pen in the mean-time.

And, Matt, obviously seems to be reacting to something, so if it's not peanut products, then what the heck is it? As you know, when I went to the allergist, I asked them NOT to test Jesse for peanuts because I felt I had my answers already (given his two anaphylactic reactions which could have been to nothing but peanut products). At any rate, because of the concoction they make up for skin testing, the actual serum or whatever it is, HAD to touch his skin. What the nurse did was simply not prick his skin where the peanut serum was. He reacted regardless. Therefore, I had my answer again and still haven't had him "officially" tested for PA.

I guess I'm also concerned because you have a lot of family celebrating to do over the next couple of months. Now, after what you said about the FTT and your Mom not even being clear after that, even though she's the one that suspected Matt is allergic, you mean the allergist confirming it still means she might not "get it"? Hmm. I think they'll be an Epi-pen going to America somehow, except I'm not clear how I'll explain that to MY drug insurance company! LOL! Again, I hope you didn't feel singled out, but this thread is about sharing between PA parents and I am so very concerned for you guys, although I also know that you have a handle on everything really well! Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

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No, I don't feel singled out. =) And I'm not sure exactly how my Mom is going to view things once we've been to the allergist, but I do know that if I can get enough 'hard facts' in her head (via videos, dr letters, etc) she will finally get it. Apparently she has been working on my Dad too. *sigh* Tonight I went to the store to find some choc chips with him, and when I picked up the Hershey's instead of the store brand, Dad commented that the store brand would taste the same, just cheaper. "Yes, but I don't know whether it's safe for Matt or not, and since it's Saturday I wouldn't be able to find out in time to make the revel bars." I told him. I didn't even get half way through the sentence (got to "safe for Matt") and he was walking away, shaking his head and sighing. Dad also mentioned earlier in the day that he saw no reason why I shouldn't make pb cookies since everyone else could eat them..."just make something else for Matt".

Oh well. They'll just have to live with it. And if it gets TOO bad, or they start going against our rules, or lead the two boys (7 and 8) to believe that THEY can go against our rules...whether we are there or not... we'll just have to quit allowing them to be around Matt. I certainly hope it never comes to that, but if it does, it does. I'm not going to risk my child's life because my mom or dad are 'anti-medicene'. (they don't believe most of what ails people are actual legitimate complaints or diseases, etc)

As for the epipen. We thank you whole-heartedly for your offer!! It means sooo much to me that you are concerned about Matt and willing to go through the trouble of sending an epipen for him! =) But, don't. lol I'm sure there would be many, many questions from the PO, border patrol, whoever looks into these types of things. LOL Not to mention the questions (and possible problems) that would arise if we should need to use it before we had a prescription for one.

As for the family celebrations...I've emailed my grandmother (too chicken-sh*t to call and talk about this, as she has questioned my decisions regarding health befor too) and explained many different things that we have learned about PA. I also asked if it would be ok with her if I brought Matt's food to the get-together, as I figured that would be easier than trying to assure that all the foods brought in were free of cross-contamination worries. I hope she is understanding (in fact I'm still nervously and anxiously awaiting her response!), but if she isn't, then we simply won't go. I know THAT would certainly cause an uproar in the family, but what else can I do, ya know? If we don't feel things would be safe for Matt, we'd be wrong to go ahead and take him.

I've been allergic to many things for a long time and have suffered some pretty severe reactions but they were all things that I could opt to stay away from.
This past Friday I was out at a movie and had some M&M's. Part way through the show, I started to feel my chest tightening and by time we got out I thought I should go to the pharmacy to get some benedryl. The pharmacist told me that he thought I should go to the hospital but I didn't think I was too bad off until about 5 minutes later.
To make a long story short, I spent the night in the hospital. Spent several days feeling like I was a walking zombie from the effects of the meds for the allergies and the meds to counteract the pain from the epinephrine. I'm terrified it will happen again. My adult kids are saying to me that I am neurotic and tonight when we went out and they would not assure me that the food was "safe" I had a coffee and nothing else in the restaurant. My daughter was upset with me and said I was over-reacting and that she could not understand why I am being so silly. "after all they told you that it seems that there are no peanuts in the cooking! Why don't you just try I'm sure it's safe!!" Am I crazy for being so cautious and scared? Am I over-reacting?
My life feels so very different now and I don't even know what questions to ask. Any advice would be so very appreciated.
Thank you
Sharon

SharonA, it's only been a week to-day that you had the reaction and less than that since you suffered all the hell you described. I feel really badly that you went through that.
I don't have grown children, but I'd be telling them that I'd get over it in my own good time (as long as it didn't take years or something). C'mon, it's been only a week and not even. This is NOT something I think you can get over easily and I believe, right now, you have every reason to be frightened and concerned about eating out. Of course, your fears may be unfounded, but given what just happened, I think they're also totally reasonable.

My son had his 3rd and last reaction (so far) 1-1/2 years ago and yet I could walk you through it step-by-step. Sometimes I will ask him if he remembers anything about it and just recently he told me about the person who gave him the pb rice krispie square. So, even in his now nearly 5 year old brain there is a memory of that night. Obviously, because he's so young, it hasn't affected him adversely, but he did immediately afterwards start to question every food he was offered.

Have you always been PA or is this something recent?

I'm sorry to sound harsh towards your children, but I really don't think they're accepting what you've just gone through. This is, by no means a comparison, but 20 years ago, I got food poisoning from three bean salad. I loved three bean salad and I believe this was even a batch I had made myself. I have never eaten it since.

I'm not saying that you won't be able to go out and eat comfortably for the next 20 years, but I do believe you are allowed some time to deal with this. And, stay away from the M & M's! Sign up to receive some Canadian Smarties instead (no one said that it was only kids that could get them from us Canadians!).

I hope you'll be okay and I almost feel sure that you will be, but, as I said a few times now, it may take a bit of time that your kids have to allow you to have. Please let us know how you make out. Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

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Sharon : I have to empathise with you. I am recently diagnosed and 40+ ;o). I am a little bit paranoid and if I am not completely sure, then I won't touch the food. I don't go out to restaurants to eat now - except for one pizza outlet here in the UK which recognises the problem and does something about it. All too often,I find that the staff in restaurants will "reassure" you that the place is nut-free, when they don't have the foggiest idea what they are talking about - they don't want to lose the custom. It sure would be a different thing if they had to deal with the anaphylactic reaction, I bet. Keep safe - I share your caution & apprehension...

Sharon, I don't feel as though you are overreacting. First of all they obviously have not ever reacted to anything like you have. Second thing my brother is a chef,and he himself gets mad at the staff for lack of knowledge. My son 14 years old and he very seldom goes to a restaurant. My brother told me that I should never take him out to eat because no matter how much drilling he does with his own staff they do not listen. There was a woman in his restaurant a few months ago with an allergic child. He took the woman to the kitchen and totally prepared a safe meal for her child. He walked her through the whole meal step by step and she was very pleased. This is because he knows how the reacions are for my son and my other brother whom has shellfish reactions. You can have nice dishes right at home. I am proud that you even had a cup of coffee. Now they even make many nut coffee's. You I hope are o.k.,and if you ever need anyone to understand your feelings email us. Tell your daughter to email me and believe me we can tell her YOU are right to eat only at home. Take care and have a good day;. claire

Thank you all for responding......somehow I just need reassurance that I am not neurotic and that I these precautions are not only justified but necessary.
You are all right that it's hard because this is all so new for me and maybe even harder because I am a nurse and I think they feel that I can "take care" of any health situation.
Thank you for being so caring and helpful.
Sharon

I'd like to respond to the original question in this post>
I don't have certain things that I am more comfy talking to other PA/PAparents about.
I do thnk it is beneficial to talk to other PA/PA parents because nobody knows better of what your talking about, and they've proably been there before
But if you ask me you should share all the things you know or feel about PA with everyone PA or not because how else will we continue educating the world on PA if we only share these things amoung ourselves! [img]http://uumor.pair.com/nutalle2/peanutallergy/biggrin.gif[/img]

MomLyttle, no, no, that's not what the thread was saying! Certainly, we should be out there screaming from the tops of high buildings if we could about PA to educate people. But, are there certain things, that you, as a PA parent, or PA person ONLY feel comfortable sharing with another PA person/parent?

No one understands the complete terror I have when I send my son on a field trip. I thought my Mother would, as I posted above, but she didn't "get it" (and that's okay).
But, if I had come into this board (as I probably did on a field trip last year) and posted, I would have had many other PA parents that understood EXACTLY what I was going through. It's not separation anxiety or fear of the bus having an accident or anything like that, that my Mom may have been talking about, it's the fear that the next time we see the happy smile beaming out of the bus at us, it will be in the hospital due to a reaction because they were placed in a new, different, situation. That's what I mean.

No, no, I try to educate as many people as possible re PA. When The Toronto Star article came out and Cayley's Mom posted about it, I sent it to every PA parent I knew, but I also sent it to everyone that knows my son and might be interested in reading further about PA. Definitely, education is the key for us to enable our children to lead lives with more safety, less teasing, whatever. But I'm still positive that there are only things that we either keep totally to ourselves or we feel comfortable coming to this board and talking about. Do you know what I mean by this now?
I think you probably do.

If your best friend is a non-PA parent, who doesn't quite "get it", do you speak with her about finding nuts all over the place at the grocery store, or do you come in and post here? I would come and post here as a non-PA parent/person wouldn't even understand why I was complaining, or, if they did understand, they still wouldn't "get it" to the degree of what I was experiencing it.

SharonA, I think your fears, right now, are right where they should be. You have every reason to be putting a lot of precautions into place to ensure your future safety and I don't think anything you're doing would be considered neurotic, given the circumstances.
Now, I do know when I posted last night to you, I may have sounded harsh about your children. I think they may, in fact, be suffering from denial. Do they realize that they could have lost you last week? At any rate, I did sound harsh, but I also still meant what I said, I think they should allow you the time YOU need to get over what happened and also allow you to put whatever safety measures you feel you have to put into place, into place, without questioning them.
You are not being neurotic or any other bloody thing, you simply are trying to ensure your safety, and very quickly after a bad reaction. It is sometimes very difficult for children (even grown) to deal with things when it comes to their parents and it's probably really hard on them too, but it's not coming out the right way or the way that you need to hear it. Best wishes and be safe! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

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Sharon, you cannot possibly over react when it comes to your life. I have been in restaurants when waiters have said,"I don't think there are any peanuts in what you ordered." When I tell them my life depends on it they go back and check on it. More than once they have come back and said they were surprised to find out that there were peanuts or peanut oil in the food. I do go out often and will not stop doing so, but that is my comfort level. We each have our own comfort levels. One isn't right or wrong. We each decide the best way to handle it for ourself. Bottom line is that you should handle going out the way you feel comfortable doing so. Andy

Andy, that is absolutely wonderful what you say to the staff at restaurants to ensure you hopefully get the right answer. But, can you imagine that you even have to say that? What is wrong with people? They'd sooner provide you with whatever answer just to get your order in, but when you tell them that your life depends on it, and therefore, you might be dropping dead at a table that they're
waiting on, they go and get the right answer for you. I think it is wonderful advice for SharonA though.

Somehow, I got the feeling from her posts, and I don't mean to be speaking for her, that eating out would be something she would be doing again in the future, once she got past this very recent, very severe reaction. But, I also think what you say to the staff at restaurants is wonderful. It's sad that you have to say it, but if it keeps them on their toes and gets you the "right" answer, then maybe all of us should be asking the same thing when we go. Maybe even that bit of advice will enable SharonA to be able to go into restaurants again sooner.

As I posted to you in a different thread, Andy, I always enjoy reading all of your posts and this was another one. I found it sad, but, on the other hand, it might come in really handy, especially for people like SharonA who are currently afraid to go out.
Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

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Thanks Cindy for your kind words. I also enjoy reading your posts. They really make all of us think. In restaurants they try to get you in and out. Unless you are into this like all of us are, you would not understand the severity of PA. I understand everyone's concern about going out to eat. I once ate an enchelada with red sauce that had peanut butter in it in a Mexican restaurant and once had split pea soup that had ground peanuts in it in a health food restaurant. They were both years ago before I started asking. It is certainly not completely safe eating out, but I do, I am careful, ask questions, and keep my epi pen with me just in case. Andy

I want to clarify one thing.When I said ," Unless you are..." I was referring to people that work in restaurants. I should have written that clearer. Andy

Andy you said you ask a lot of questions.....would you mind sharing so that I will know some of the things I should be asking......right now the only question I know to ask is "does this food contain peanuts? and Has it been prepared anywhere near other foods that do?"
I cannot avoid eating out and right now I am not even sure what to buy and what to avoid bringing home. I have looked for some books to help but have not found any as yet.
Next week I have to travel and am already looking for nearby Kelsey Restaurants. They seem to be sensitive and caring about peanut allergies PHEW! at least I have found one!
I knew I wanted to loose weight but 8 pounds in one week is a bit too much and not really healthy. Gawd I never thought I would complain about loosing weight! *laughing*
Once again I want to think you all for your help and caring.
Sharon

Sharon, all I do is ask about peanuts and peanut oil. You just have to make sure the server asks the right person. If I realize they just give me a quick answer and do not bother to check it out, that is when I tell them my life depends on it and then they take it seriously. Andy

Well a little more than a week has passed since I found out I am PA. I have started to adjust well and feel that I am being reasonably cautious.
BUT..... I am ready to divorce my daughter!!!!!! I don't think anybody but people who truly understand would know what I am feeling today.....thank goodness for this forum or I would be feeling 100% alone.
We went shopping for groceries and there were two almost identical tomato sauces and one stated vegetable oil and the other listed each oil that they use. I said I was more comfortable using the one that listed things in a clear and concise manner and she actually got upset with me and was ranting around about how vegetable oil is perfectly safe! I tried to tell her that from what I have been reading that unless we know for sure what oils are included in vegatable oil it is probably best to use one that is well marked. She is not a baby! She is 28 years old!!!!!!!
Well I walked out of the store, totally humiliated (people were watching her running around and pointing at oil bottles while yammering at me) and didn't buy anything but I'm sitting here in very upset almost at the point of tears! Is there ever going to be a time when I can feel that I am normal again without having to justify my concerns to people who "should" care about me?
Thanks for letting me rant!
Sharon

[This message has been edited by SharonA (edited November 19, 2000).]

SharonA., you don't know how badly I feel for you just having read your latest post! I didn't realize you were in Canada, or I wouldn't have suggested that you post in the Americans who want Smarties thread. I'm sorry.

Now, as far as I can tell, in Canada, if something is marked vegetable oil, it should be "safe", if it is name brand. Other than
that, they specifically (although they are not required legally to do so) label which oil they have used. I have never come across a sauce with peanut oil in it. However, having said that, it is also your right, at this time, just recently diagnosed, to want extremely clear labeling on the things that you are going to purchase. If you feel more comfortable seeing "canola oil" rather than vegetable oil, so be it!

I am concerned now, because as I posted on a thread called Christie's, under Manufacturers, their Canadian plant has decided to use peanut flour in some Peek Frean cookies. Now, thankfully, none of these are cookies that I purchase anyway. But, I e-mailed Nabisco/Christie (after calling and speaking with what I thought was a basic nitwit on the phone) to express my concern that they do not change the products that I do rely on to feed my very picky eater PA son to include peanut flour. Why do we need peanut flour in this world? Or, why do we need it in Canada where it is not a cash crop? It baffles me!

I feel SO sorry for you. I know that in my first post in response to your first post, I did sound rather harsh about your children and I didn't mean to. But I did explain in further posts that perhaps they are in a state of denial. I'm not clear, but that sounds like what's going on with your daughter, in particular. She does not believe, and only a PA person or PA parent would believe, how many products list some type of peanut product in them or have the allergy alert warning on them. When it comes to grocery shopping, this is one of my most stressful times and this has nothing to do with two munchkins running around crashing into everything with two mini-carts! [img]http://uumor.pair.com/nutalle2/peanutallergy/biggrin.gif[/img] It has to do with reading every single label, even of your tried and true products because they might suddenly have decided to use a peanut product!

A couple of years ago, my Mom was buying Honey Rice Krispies for my PA son Jesse. She had bought the box I was using, or I'm not even clear, maybe I had, on the ASSUMPTION that it was safe. So, I'd been feeding him the cereal half of the box anyway, when I suddenly saw the label "may contain trace peanuts"! I was aghast! I called my Mother and asked her if she had any in her home, as she liked them also, and yes, she did. Well, I asked her if she would check the label, and sure enough, it DID NOT say "may contain trace peanuts". This meant a call to Kellogg's for me, who provided me with really good information and sent me a brochure re their products and which ones are safe. But this is a perfect example of how things change and change quickly.

This is your first experience grocery shopping since the diagnosis. I think you should have been given a break, but obviously, you weren't. I suggest that if you are able to physically go alone, do so.
Take every single minute that you need to feel comfortable with your shopping list and feel comfortable reading every single ingredient on the list. I now have bifocals because of this alone! I'm not able to go alone, I always have one or both of the munchkins with me and it makes it horrendous, especially with the added stress of having to read labels. What I find I do, is just stick to what items I find "tried and true" with a quick glance at the labeling to make sure they haven't changed anything on me!

I'm wondering if you were able to provide your family with some literature about PA if this would make them understand any better.
I feel it's denial - they could have lost you last week, and some of us grown children (and I'm a lot older than your daughter) have a helluva way of showing it when we're scared we might lose a parent. Perhaps if you posted on this site, that you wanted to provide information to your children, you would receive some really great links about where to find the appropriate information.

I know that the two links I use are non-PA parent friendly, but they're also articles written by PA parents regarding PA children, not PA adults. The other place I like to get information from is more doctor-like in it's information but does get across the seriousness of PA.

There is a huge adjustment that will be going on in your life, and at what a horrible time, with Christmas coming and nuts galore and I'm struggling to think of something that would comfort you in the way that you really need it right now. Maybe even if you could show your children this website.

I know that there is another PA adult who was recently diagnosed who has just started posting on this board recently, Nick, from England. Perhaps you could contact him by e-mail and ask him what he does to inform family (although from his posts I understand that he does not have children, but certainly he had to explain it to his wife and others).

In some ways, I'm glad that my son was diagnosed at an early age, 18 months, it's something that he will always live with. It must be quite a struggle to find yourself in this situation when you're older. Now, for me, I stopped eating peanut products after I found out my son was PA, but it's not like I HAD to.

I hope SharonA, that I've said something, in all of the long ramble above, that has been of some comfort to you. Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

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SharonA, sorry, do you have a prescription for an Epi-pen, especially given your hospital stay?

Also, quickly, a few months back, I forgot vegetable oil on my shopping list and my husband ran back and quickly grabbed some as I was already in line. At any rate, he grabbed the one oil that said "may contain peanut oil" and he had to make another dash back to the oil aisle to get a "safe" oil.
Mistakes can be made in a grocery store where you're under pressure to move quickly and that's why I suggest you go alone when you feel you have all the time you need to feel safe about what you're buying.

You could even post what foods you normally buy and I'm sure a lot of us could help you out on whether or not they are considered "safe". Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Also, since finding out you are Canadian, please check out the Canadians thread under Main Discussion for Canadian pertinent information. I think you will find that our labeling is better than in the U.S., but from what I've read recently, not as good as it is in the U.K. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

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Hi Sharon. I am sorry you are having such a bad day, but glad we are hear to try to give you some sort of comfort. Believe it or not in time PA will become second nature to you and your daughter will understand. You have power here and that power is education. Over time hopefully your daughter will be educated about PA and understand your "rather be safe than sorry" choice in dealing with PA. I automatically analyze things in all aspects of my life with a benefit versus burden analysis. What is the downside versus the upside? When it comes to sauce for example if you have a choice between 2 and you feel uncomfortable with one of them, you pick the one you feel comfortable eating. The downside is zero. The upside is you eat what you want and feel safe doing so. Don't let PA control you. You must control PA and you do that by intelligently and rationally making choices that make sense to you. In time your daughter will get it. Cheer up!!! Andy

Hi
Once again you have bailed me out of a "sad day" Thank you all for your thoughtfulness and caring .......Gawd I feel like such a baby the past week .....
First yes Cindy I do have to carry the EpiPen. In retrospect, I think this is what is tweaking my daughter....it's the first time that there is something tangeable to indicate that I am not 100% safe at all times.
I'm trying hard to ensure that I am in control and maybe I need to let them in a bit .....even if it is just to say that I was so very scared that I was going to die.
The funny thing is that the reaction is not what has made me so scared, it's how sick I was from the shot of epi! I don't want to put myself into a position of needing it again.
Since I am in hospitals constantly I feel pretty secure that my staff and/or the doctors would be right there immediately if I should ever need help. My antibiotic reaction was at work, and I didn't even realize something was wrong, it was my colleagues who got me to the emergency department right away. But this is the first time I needed epi and I felt as if my head was going to explode!
I have been alone and "in charge" for so long that I think I sometimes forget that things that affect me affects the rest of the family.
Today I talked to Alissa, my daughter, about the sites from companies explaining what their labeling standards are. I'll send it to her in a couple of days. Steve my son, has begun to read the labels and *smile* today told me not to eat the lunch he made for me because of what he read on the label.
You were all right and *smile* I am not surprised. We just needed some time to adapt. Andy! You are so right. I don't feel different and I don't intend to allow this glitch to get in the way of living! I just intend to use my common sense and like you said, I'll weigh the up side vs the down side and keep on laughing!
Thank you all again
*hugs*
Sharon

SharonA, I'm glad that we were able to help you through a difficult day. I don't know how many times people on this board have helped me through difficult days. Countless.
I'm not saying that that is going to be the case for you, but, for example, if I felt like I was ramming my head up against the wall with my PA son's school, I'd come in here and ask questions and get some support, encouragement, advice, etc. If I feel like venting about something someone may consider stupid that has to do with peanut products, I come in here. If I have information to share I come here. It's just a really positive place to be most of the time. I'm glad you have the Epi-pen and here's hoping you don't have to use it! Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

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Hi Sharon. I am glad things are looking up. Andy

Happy Thanksgiving to all of you south of the border! Hope this day is filled with fun, happiness and health.

Sharon of the Candian Persuasion!

As you know from my previous question, I have had real discomfort in saying anything to my colleagues. Somehow this is "private" and I am a very private person . *laughing* guess you would not guess that from how open I have been about my fears on this board.
What I do want to share with all of you though, is how fortunate I feel I am.
I am an adult and it's easy for me to say no thank you when offered something. I am an adult and I think it's easy for me to have to be concerned about my own "inconvenience."
I truly feel so sad for the problems that you parents of PA kids have to face each day. It must be so very difficult and lonely at times. When I have to worry about only myself, it's much easier than when my adult kids have problems and/or my elderly parents have problems - and I don't have the major responsiblity for them!
I can be very discrete and say no thank you in food situations, but you depend on the good will of others around you, the support and help from schools, athletic coaches, babysitters etc. I don't have the worry of seeing my PA child going out alone to events and praying that he/she is careful or that foods offered are safe.
I have read through so many of the topics, and yes, at first it was for totally selfish reasons, I wanted to regain my feeling of control. Now I read them and see a group of exceptionally strong people, dealing with a problem that is not well understood. Though it all, you reach out to offer support and guidance to strangers. Somehow you have put the feeling of community out into this impersonal medium called the internet.
Thank you all!

Sharon who is feeling very grateful and philosophical

Just got back from my trip to Vancouver and I cannot begin to describe how well things went. I was truly terrified of the plane trip, staying alone in a hotel room in case I reacted, and of course the business lunch.
Air Canada although peanut aware they are not peanut free. Nuts of all kinds were served in first class and the smell was something! I was sitting a few seats back from the great wall! The attendants were absolutely terrific, ensuring I sat away from other passengers (since so many brought their own snacks), making sure I was given a drink in a closed, washed can (I would not eat anything else on the flight) and taking a quick lesson on how to use the epipen. I did wake this morning with a swollen tongue, runny nose and some wheezing, but I am not sure if I was reacting to a cross contamination or the smell since I have never had a "smell" reaction before.
The Hoiday Inn was exceptional!!! Once made aware of the allergy they went above and beyond anything I could have imagined. I was told that in Vancouver the training on food allergies is extensive and to help the situation, the assistant manager had an anaphylactic reaction a few months back from seafood. I did as you all advised me when I was at my business dinner and even that went so very well.
All in all it was a great success and I have all of you to thank for that.

Hugs
Sharon

Sharon, I'm so glad that you're home safe and sound. Now, I only have one question for you - when you had the reaction and you weren't sure if it was due to cross-contamination or the smell, do you remember what you ate that may have been cross-contaminated?

The reason I'm asking is, if you could remember, then perhaps we could sort out if it was a cross-contamination reaction or a smell reaction.

However, aside from that question, I am really glad that you're home safe and sound as I know you were anxious about the trip.
Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

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Sharon, sorry, when you had your first reaction a few weeks back, it was because of M & M's? Is that right? Were they plain (so labeled "may contain) or were they the peanut ones? I understand that you did not know you were PA at the time. I just wanted to know what type of M & M's for some reason.

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

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Hello! Sharon and others I am just wondering if you are all aware that plain M&Ms have peanuts in them. I took Christopher way back when he was little because of a reaction,and I was informed that they use peanut in the plain ones in order to harden the shell of the candy. This was told to us in Vermont by an allergist. People have actually had arguments with me over this because they think I am wrong. I have checked with many different doctors that assured me of this. Someone once insisted Christopher could have them even when I was screaming in their face to hush up and not run my life. He knows this and obviously will not touch them. I have however given them to my 2 year old and he loves them and was fine. I only do this when we are alone of course. This is why I feel that my 2 year old probably would be fine if given nuts by accident. Best wishes to you all. claire

Hello! Sharon and others I am just wondering if you are all aware that plain M&Ms have peanuts in them. I took Christopher way back when he was little because of a reaction,and I was informed that they use peanut in the plain ones in order to harden the shell of the candy. This was told to us in Vermont by an allergist. People have actually had arguments with me over this because they think I am wrong. I have checked with many different doctors that assured me of this. Someone once insisted Christopher could have them even when I was screaming in their face to hush up and not run my life. He knows this and obviously will not touch them. I have however given them to my 2 year old and he loves them and was fine. I only do this when we are alone of course. This is why I feel that my 2 year old probably would be fine if given nuts by accident. Best wishes to you all. claire

HI HI
No the M&M's were peanut filled. I started to feel funny while eating them and put them away.
On the trip I cannot think of one thing that caused the cross contamination. The hotel was so cautious and I didn't eat anything for a long while before boarding the plane; just to make sure that a reaction would happen on the ground if I was to have one. I was at the airport for 4 hours so I did have a drink of pepsi but from a closed can.
I have absolutely no clue what caused the slight reaction. I came into the house after 2 am so I just had a coffee and went to sleep.
Sharon

SharonA., were there peanuts being served on the flight home too? Did you smell them as strongly as you described in your post above on the flight home? I am wondering if you had an airborne reaction. You may like to find out, for your own comfort zone, by posting a separate thread. I'm just concerned that you may, in fact, have to make sure you are on "peanut free" flights if that is possible to ensure that you don't have any type of reaction the next day. Although the reaction was relatively mild, it wasn't slight. Just wondering and hoping not to cause you to be over-concerned. I was just wondering. I do know that my son did not react to the smell of peanuts at the circus but I'm not clear that he may not react in the future. Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

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Cindy
The smell was not there on the flight over.....it was only on the flight home that the smell was very strong. It was the next morning (or actually about 4 hours later since we were delayed) when I woke feeling tightness in my chest and had the swelling in my tongue....
Excuse my ignorance but what do you mean that I may have to post in another thread....I'm bulletin board challenged!
Shar

SharonA., no you're not bulletin board challenged! LOL! (And I have a story to go with that actually, if you want to know bulletin board challenged - I was on here for a couple of months and I kept seeing LOL! and I couldn't figure out what the heck it was, Lord oh Lord, Love our Lord. Never did Laughing out Loud cross my mind! I had to e-mail someone I had become friends with off this site to ask her what this meant - now, that's challenged! [img]http://uumor.pair.com/nutalle2/peanutallergy/biggrin.gif[/img] )

I'm wondering if it might be beneficial for you to post - Do You Think This Was An Airborne Reaction? under either Main Discussion (where it may get more attention), Living with Peanut Allergy, or, of course, Reactions. If it were me, and I'm definitely not trying to tell you what to do, I would post it under Main Discussion where it will receive more attention and possibly quicker attention. I, myself, very rarely go into the Reactions discussion part.

I would describe your flight home, how the smell was VERY prevalent and then how you reacted and within what time frame. SharonA., only YOU know if you require a specific answer to this, and again, I am in no way telling you what to do. I'm just wondering if you posted this as a question and got some response, you may be able to pinpoint it as definitely an airborne reaction, which may be important to know.

As you are probably aware by now, one never knows the degree of severity of the next reaction and when I read your post I was simply concerned that your next reaction might not be as mild, but could progress in severity to anaphylactic again. However, as I said, my son did not have an airborne reaction the one time he was exposed to airborne peanut smell, so I'm not even clear if you can have an anaphylactic reaction to airborne. I think you probably can, but I don't know. But, perhaps others know. Again, I just posted this out of concern for you, because I didn't actually like reading how you felt on your return home and was very concerned for you.

SharonA., always know that when I suggest something as I have done above, that it is out of caring and concern and I am not telling you what to do or not do. If you choose not to post a question re this, I certainly would not disagree with you. Do you know what I mean?

At any rate, I think I have been fairly clear why I think it may be a good idea. But then, I'm in here asking questions all the time, and very often (and you may find this extremely odd), I don't even require the answer for myself or my son, but it's a question that someone else has raised in a different thread that I consider a really thought provoking, good question.

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

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Cindy
Please know that I don't doubt your sincerity and caring. Don't ever feel you have to explain yourself!
Shar

SharonA., I think I just have the need to explain myself really clearly here lately because of some unpleasant things that have happened to me, and others, on the board within the last month or so. But, also, I tend to like to be very clear worded anyway.
I'm glad you know I'm sincere and care about you. That's really important to me. Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] Oh, and this should be signed, 41 Year Old Mother on Verge of Nervous Breakdown due to 5 Year Old's Birthday Party Tomorrow - seriously and sadly so!

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Hi
The fear I feel when somebody has had peanuts and/or peanut products in the vicinity of where I am is sometimes overwhelming.....it's so hard to explain this to somebody who is not PA.....I am not going to tell my kids that they cannot bring things into the house as we are all adults but just the thought of touching something they have touched after they have handled peanuts, terrifies me........I don't know if I am going overboard cleaning everything in sight but I get so scared......I don't feel this way if I don't see the peanuts.....is this normal?
Shar

SharonA., I don't know if I should be answering you post, because you may not consider what I have to say at any time "normal" (I'm joking, okay, I know it's not allowed). I personally think that your reaction is quite normal.

My daughter, during the late summer, in sandals decided she had to step on the melting chocolate bar on the sidewalk after I had told her not to. I didn't even know if it had peanut products at the time I told her not to step on it.

Well, she did anyway, and guess what? It was FULL of peanuts. I immediately took her shoe off and figured out where we could go to to clean the shoe off properly. I decided the donut shop. I cleaned her shoe and much of the offending chocolate bar off on the grass beside the sidewalk. At any rate, I was absolutely terrified carrying her shoe (I wouldn't let her put it back on again - I wander around barefoot all the time). I held it away from me and away from my PA son. I rushed into the donut shop where we had been planning to go later in our trip anyway. I went straight to the bathroom with my daugher and I asked my son to wait outside the bathroom door for me.

I scrubbed that shoe, I don't know how many times. I washed the bottom of her wee foot.
Then, once I was sure that the chocolate bar was completely gone, I put her shoe back on and began scrubbing my hands. I scrubbed them at least three times.

When we ordered our food there, I asked Jesse if he could please pick up his own donut on the counter rather than me picking it up. I was still scared that there might be something left on my hands that would end up on his donut.

I know this was a very long-winded response, as always. I think I'm just trying to say that I understand exactly where you're coming from and as you can see from what would be considered a small incident if PA was not involved (or perhaps not an incident at all actually), you can see how freaked out I was about it.

I'm wondering if you could make your home "peanut free" whereby your children wouldn't at least bring peanut products into your home. Or, perhaps they're doing that already and it is your concern that they may have eaten something previous to coming. I truly believe you are not being too far gone in your fear. We do not allow any peanut products or "may contain" products in our home. When I use my almond oil hand moisturizer now, I do it after I have checked on Jesse in bed. I am so afraid I'll touch him with my hand with almond oil on it and he's not even allergic to almonds.

I'm sure that you and your family will find a way to deal with this that makes all of your comfortable. I don't believe they'll all decide to stop coming to see Mom because of her newly diagnosed PA! It's a tricky thing, and in some ways, I'm actually glad that Jesse has been PA since 18 months old. Our life changed then and it changed radically again after he had his first anaphylactic reaction. Now, as far as our own home is concerned and other people coming into it, we've been doing it for over two years so we're really comfortable with it.

I also think after having had an anaphylactic reaction in the not-to-distant past, it's probably more "up front" in your mind and it would be cause for concern.

Okay, so if you can pick through all of what I just posted, SharonA., I'm trying to say that I don't personally think you're insane (but then remember, I'm stabbing the Pillsbury Dough Boy with an Epi-pen and mailing him off if I can possibly pull it off - so consider the source! [img]http://uumor.pair.com/nutalle2/peanutallergy/biggrin.gif[/img] ). I just get the feeling from all of your posts that you will work through this fine and with your family right there with you! Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

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Gawd Cindy you don't know how much your post helped me ....sometimes it's as though nothing has changed but sometimes I get so nutty (pun intended) about everything.....I think sometimes that the safety of working in a hospital environment has shielded me from a lot of the fears because I figure that somebody will be right there to help me if I have a reaction .....my previous two reactions that required hospitalization (to hazelnuts and then antibiotics) were both at work and I went into fight or flight ...it was my colleagues who recognized what was going on and got me to emergency right away ......although they both required extended stay in the hospital this is the first time that I sensed that I was going to die if I didn't get help .....I kept telling the doctor that I was scared that I was dying and she didn't leave my side until I said I felt better.....now when I am home I keep going "over the edge" at the slightest thing....the weather is -35 here and I'm terrified my epi won't work if i need it ....new restaurants scare me and I need to remind myself that I am just having a slight panic attack each time I taste something.....I know I sound like I am falling apart but truly I'm not ...I just don't feel as secure in my own skin anymore and I don't like feeling so vulnerable......It truly does help to know that I am not alone....

*hugs*
Sharon