Do You Think About PA Every Day?

Posted on: Thu, 09/28/2000 - 5:38pm
Anonymous's picture
Anonymous (not verified)

Do you think about PA every day, aside from your regular routine of checking labels, controlled environment, etc.? What are the triggers, aside from coming to this site, that make you think about it?
For me, to-day, I thought about it when I was away from home for 3 hours and came home to a phone message. I was afraid something had happened to Jesse while I was out. Then, in speaking with my mother-in-law tonight, she said she doesn't really worry about my kids as far as their allergies, asthma, etc., except for the PA so that was a discussion topic. When your child is with you and thereby implicitly "safe", do you think about it? I have to say that aside from reading the labels on all food and living in our controlled environment which we all consider "normal", I don't think about it as long as Jesse is with me because I consider him "safe". When he goes to school, which is 2 days one week and 3 the next, it's in the back of my head if the phone rings. I don't see him with PA stamped on his forehead, I don't notice his MedicAlert bracelet. I probably think about his asthma as much. What about anyone else?
Best wishes!

Posted on: Fri, 09/29/2000 - 12:10am
anonymous's picture
Joined: 05/28/2009 - 16:42

Cindy, I too think about PA everyday. It's been three weeks, since our son's allergy was confirmed. I'm a working Mom, and it's on my mind most of the day. I'm constantly coming to this site to learn more. Yesterday, I told my sitter that it was ok for her to feed my son spaghetti that she made. Eventhough she makes her own sauce and he has eaten it 100 times before his allergy was confirmed, I still called her at lunch time to make sure he was ok. Today, two of the other children walked in with baggies of Cocoa Puffs. Eventhough, my sitter has made her home peanut free, and I know that she provides the children all the food for lunch and snacks(except mine), my heart stopped. PA is always on my mind. I try to keep a sensible head about the whole thing, but sometimes it's hard. I feel that I am handling his pA well, but I've had nightmares of him having reactions. Two days after we found out about the PA, we took my son to a major league baseball game. I was terrified taking him, but we all survived, and we all had a good time. It may be wrong, but I always tell myself that if I could control the situation at the baseball game, I can keep my son safe everywhere else. So, Cindy, you are not alone. This web site is excellent in connecting people with the same worries and questions.

Posted on: Fri, 09/29/2000 - 3:15am
andy's picture
Joined: 04/26/2001 - 09:00

I will tell you that my mother never thought about my PA. We were always careful and avoided peanuts, etc. That is how we dealt with it. It is different now because peanuts seem to be everywhere. Also, noone ever told us how serious PA is. I do think about it everyday, but I do not worry about it every day. I regularly check this site and try to give my opinion when I think I can add something to a discussion, but PA is just something I have, always had and something I deal with without disrupting my life. Andy

Posted on: Fri, 09/29/2000 - 3:39am
Anonymous's picture
Anonymous (not verified)

Andy, I'm sorry I can't remember from your previous posts hold old you are, but do you think that it's a combination of the increase in PA and also information overload that has us parents the way we are rather than being like your mother? Also, that was an excellent distinction - do you think about your PA every day or do you WORRY about your PA every day. Thank-you. Best wishes!

Posted on: Fri, 09/29/2000 - 3:50am
Sandra Y's picture
Joined: 08/22/2000 - 09:00

Jonathan's Mom,
I just wanted to send you an encouraging word. It gets easier. You mentioned that your son was diagnosed just a few weeks ago. It is unlikely ever again to be as frightening and emotionally difficult as it is right now, since you're dealing with a new reality, and information overload. It will get easier for you as you live with it, and fewer things will set off those panic alarms. I am cautious and it's always in the back of my mind, but I really don't worry anymore, at least not nearly like I used to. It's been 3 years without a reaction and my son is 4 1/2 so he understands about his allergy at this point. Anyway, I just wanted to offer you some reassurance that how you're feeling right now won't last forever. Good luck.

Posted on: Fri, 09/29/2000 - 4:38am
DMB's picture
Joined: 02/22/2001 - 09:00

Cindy--I think a lot of the worry has to do with information overload! My son was diagnosed with pa at 12 mos. and had an anaphylactic reaction at 18 mos. which is when we finally became better educated, saw an allergist, and got an epi-pen. I didn't find this site until he was 2 1/2. For the year after his ana reaction, I didn't worry too much, kept him away from peanuts, and he didn't have any reactions. I was extremely calm. I knew it could be a big deal (since I'd witnessed his anaphylactic reaction) but I didn't let it become a HUGE deal. Anyway, after I found this site I think I cried for 3 days. I couldn't believe all the things I had been letting him do and all the things I felt I had been doing wrong. But you know what? After I had time to calm down, I realized that I must've been doing something right because he hadn't had a reaction. It's just that after reading these posts it was just too much information all at once! Don't get me wrong, I love this website now and I really have learned so much from it. But now I pick and choose what to incorporate into the management of my son's peanut allergy rather than trying to do what everyone else was doing. But in response to your original question, I do think about pa everyday because I have to think about it every time my son eats something--but I don't worry about pa everyday. I only worry about it when he's away from me which is not very often. He just started preschool a few weeks ago so now I worry about pa on Tues and Thurs mornings from 9:00 to 11:30!!! Deanna

Posted on: Fri, 09/29/2000 - 4:56am
Tina H.'s picture
Joined: 10/13/1999 - 09:00

I have to admit, I think about it everyday and worry about it every minute. And, my daughter is nine! She only had one reaction at 13 months. Hives and swelling of the eyes. I think my biggest problem is thinking about the "what ifs". And, I am embarassed to tell you how much time I spend trying to figure out the statistics. I guess I am searching for a way to lessen the fear. This allergy is just so difficult to get a handle on. Most doctors don't have a clue...the general public doesn't have a clue...and most of us go back and forth from denial to terror. It just kills me that something so seemingly harmless can be so harmful to our kids. I can't tell you how many doctors have told me, "Just have her stay away from peanuts." Like this is no big deal! And, then, I go to this site and reality sets in. And the panic. And the fear. And then, I meet parents of other kids with peanut allergy and they are totally calm and normal. Of course, they have never been to this site! But, still, I feel better again after talking to the other parents. And then the rollercoaster begins again. Also, after reading these boards, I walk away feeling that my daughter's allergy is worse than everyone else's. Probably because her tests were so high. And then, I think, wow, these people are so worried and their kids don't even have such a severe allergy! So, basically, what I am trying to tell you is this...Before her diagnosis, I was a normal, happy go lucky wife and mother. Now, I am a neurotic basketcase. [img][/img]
Oh, well, that's me.

Posted on: Fri, 09/29/2000 - 5:14am
mom2two's picture
Joined: 06/09/2000 - 09:00

I hope you were exaggerating when you said you think about this every minute. If that is the case, perhaps you may benefit from some sort of counseling to help you? I admit I am addicted to these boards but I am only on here when I am bored at work.
There are times I am very scared but most times I don't think about it.
A very well respeccted person in the PA field once told me NOT to visit these boards as they will just make you ultr paranoid. In your case maybe he is right. I must admit, sometimes the hysteria gets contagious.
Yes, its good to have the support but sometimes we need someone to say, "Hey, that is just not a realistic thing to think about" or "yes, there is a remote possibility that could happen (various cross contamination scenarious we dream up) but so is getting struck by lightening", etc.
Please try and get calm on this as our children definitely pick up on our moods. I want my child to be very concerned and responsible but I want her to be a confident happy child, not scared all the time, that is no kind of life to lead.

Posted on: Fri, 09/29/2000 - 5:17am
mom2two's picture
Joined: 06/09/2000 - 09:00

oh, and by the way, our pediatric allergist said it wasn't possible to score any higher than our daughter did on her RAST. But you know, he also said that its not a reliable indication on the severity of the reaction.
A person w/a high score could possible just get hives while someone with a very low score could go into full blown anaphylactic shock.
At least w/a high score you don't get complacent LOL

Posted on: Fri, 09/29/2000 - 5:29am
anonymous's picture
Joined: 05/28/2009 - 16:42

Thanks Sandra Y! Your kind words brought tears to my eyes. After I posted, I visited the "comfort zone" thread. It really made me feel better. Sometimes I worry that I don't worry enough. My son had his first and only reaction at about a year old. He's 20 mos. now, and his PA was just confirmed. For the last 8 months, we just "kept him away from peanuts," and he was fine. Something happens when a doctor prescribes an EpiPen for your child and makes sure you know how to use it. Your how outlook changes. Sometimes education brings fear. I'm glad to hear that it gets better. Thanks again Sandra Y.

Posted on: Fri, 09/29/2000 - 5:55am
Hope's picture
Joined: 07/29/1999 - 09:00

I think about it every day, but now I only worry about it when I am not with her for an unusual reason...what I mean is, I am not with her when she is at daycare, but I am very comfortable with her situation there and don't worry about it any more...Only if she is going somewhere new or joining a new group etc. But when she was first diagnosed (and after the denial phase passed [img][/img] ) I worried it HAS gotten better!


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