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Posted on: Sun, 07/25/2004 - 12:54pm
momma2boys's picture
Joined: 03/14/2003 - 09:00

I have to look at the other side of this issue. I think back to what I knew when we first found out about my sons p.a. Our allergist didn't even take it seriously. He gave us an epi-pen prescription and said "Don't feed him peanuts." Thats it. He never explained cross contamination, may contains, made in a facility, or anything else.
It was not a situation of us not caring. We were not ignorant. We took it as seriously as we thought we should. Upon doing further research I found this board and almost died. I couldn't believe how much we didn't know. How many times we had put him at risk and how serious it was.
I think these boards are a learning experience for everyone. So there are going to be people like me who just never find this board. They won't know what I now know. They aren't bad people. They just may not have any idea the implications and seriousness of p.a. I know I didn't.
So I try to be understanding of them and offer any help I can. If its someone I know personally I have made copies of papers I have, etc. What they do with them is their choice.

Posted on: Sun, 07/25/2004 - 1:21pm
Anonymous's picture
Anonymous (not verified)

momma2boys, I definitely agree with you, surprisingly perhaps because of what I posted and because of the thread I provided the link to.
Had you, as another PA parent, having the knowledge you have now, been speaking to me seven years ago, when Jesse was first diagnosed, well, I don't know what I would have done with the information.
Jesse had his first reaction at 18 months and we were prescribed an Epi-pen, basically told to avoid peanuts for him (not the whole family) and that was it. Not even how to use the Epi-pen.
So, for at least six months after the diagnosis, there were still peanuts in our home (I didn't buy them - I remember our BIL gave them to us for Christmas as part of our gift basket and they were opened and eaten by I suspect both myself and DH, just not Jess, and certainly no precautions about washing or anything else).
There were two dishes that I make for special occasions, so Thanksgiving and Christmas, with tree nuts in them, and certainly Jesse had both of those dishes. I continued to make the sunflower seed casserole that I love.
I thinking about the sunflower seed casserole, I'm wondering if I was even label reading because I have yet to find a sunflower seed that isn't "may contain".
It took an anaphylactic reaction for me to "get it" and get with the program (or current "comfort zone") that we now have. It took another anaphylactic reaction and Jesse almost dying for my husband to believe how severe his son's allergy was and to get over his denial.
It was even within the last year here (and six months perhaps) that I began to question Jesse's two asthma attacks and how they may, in fact, have been PA related. Of course, can't say for sure now, it's six years ago and I can't remember what was in the house six years ago. I do know that during Jesse's first asthma attack my then 13 year old step-son was staying with us for March break and I'm really unclear as to whether or not he was eating peanut products or not.
So, no, again, a "there but for the Grace of God go I" kinda thing.
Jesse had to have two anaphylactic reactions for me to figure it out. I didn't have the internet so I contacted AAIA and was sent information. Then Today's Parent here in Canada published an article re PA (it might have been about food allergies, not simply PA) and I read that and got a friend to print off the information from websites that were mentioned in that article.
That was the knowledge that I had when I went to enroll Jesse in school six months after he almost died. Thank heaven for it.
I almost wished I had of met another PA parent when we didn't realize the potential severity of PA.
It's not that I don't care about other children whose parents don't seem to "get it". I do. But I also figure out that their parents are doing the BEST they know how to do with regard to their child's allergy and who really am I to say anything else?
Even in talking to the other PA parents at the school this year, I didn't tell them about PA.com
I know that asthma is not as cut and dried life threatening as PA is. Yet, as I continue to walk through this town (and I guess in a week another one), I hear SO many children with uncontrolled asthma. It's those parents that I feel like going up to and speaking with and saying, hey, does your child have asthma? Have you ever considered that your child may have asthma?
Last year, when there was the child in Ember's class with the red dye allergy and her Mother was upset, I told the Mother to speak with the principal (she hadn't told the principal about her daughter's allergy but she was upset that accommodations were being made for the PA child and not her red dye allergic child) and I also told the principal that if the Mom needed any help, to please give her my phone number. I never heard from her. I do know that the next school she went to, the Mother did request a "red dye free" classroom for her.
I have met very very few PA parents in *real* life and I remember in our old town being really excited about finally meeting another set of PA parents. They had one PA child and were having another child tested. They had the internet (the Father was a computer guy of some sort) so they had resources certainly at their fingertips. But again, they were just SO much different than what we were, I just thought, okay, it's up to you.
Last year, I got to meet the Mom whose child was TNA and had had anaphylactic reactions. Again, totally different than I was. So, who am I to say anything? Really.
My son wears his Epi-belt. My son wears his MedicAlert bracelet. I carry an Epi-pen in my purse. I do the things I need to do to keep him safe. In the journey, certainly he has become empowered to keep himself safe.
Although this may sound bizarre, because we are dealing with a life threatening allergy, to me it's another aspect of parenting and everyone does do it differently. None of us here deal with PA EXACTLY the same way. None of us have the EXACT same *issues* or concerns. But I do feel that we're all doing the *right* thing by our PA children and those other parents probably feel the same way as well.
Again, who am I to say?
Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Posted on: Sun, 07/25/2004 - 6:11pm
smartalyk's picture
Joined: 07/20/2004 - 09:00

Well.... I was that parent.
My son was diagnosed at 17 months and told to stay away from peanuts and all other nuts as well. Our pediatrician didn't prescribe an Epi-Pen. He gave us zero information. He did not refer us to an allergist. He just said that he would give my son allergy tests at age 3 (skin prick test at that!). He still didn't prescribe an Epi-Pen at age 3 when my son tested positive. It wasn't until after this doctor moved away and my son had a reaction to eggs that another doctor in the emergency room asked if we carried an Epi-Pen.
I knew nothing and I trusted my doctor. We never had the internet five years ago. I am just glad that my son survived and now I am informed and a vigilante for his sake!! Would you believe that up until almost 2 years ago we still had peanut butter in the house? We just washed well before and after. Acckkk!
Now I meet moms who don't take their kids' allergies serious and I feel sorry for them, even sorrier for their kids who aren't being protected [img]http://uumor.pair.com/nutalle2/peanutallergy/frown.gif[/img] I do give out information to those who are open to it. But I work in a school and have observed that they haven't listened [img]http://uumor.pair.com/nutalle2/peanutallergy/frown.gif[/img]

Posted on: Sun, 07/25/2004 - 9:39pm
MommaBear's picture
Joined: 09/23/2002 - 09:00

Quote:Originally posted by Alternative to Mainstream:
[b]I know that asthma is not as cut and dried life threatening as PA is. [/b]
*Personally? in my family's own unique, highly individual, and unique situation?* *I* wouldn't say that.
I mean, are we talking "Potential"?
Last status asthmaticus episode my son had was, gauged on signs and observable symptoms, (and possibly mere definition.....) [i]very life-threatening[/i]. Near Death. An absolute emergency even. Despite progressively increasing, multiple, aggressive interventions to avert it.
Looking back, [i]I don't know why on earth we weren't in the emergency room[/i]. Wait. [i]I do:[/i]
[b]Denial and False Hope.[/b] It's a killer. That, and
(1.) too much faith in the interventions we had on hand,
(2.) too much faith in our own knowledge and skills.
As well as for [b]selfish[/b] reasons. Admittedly.........we, [b]I[/b], didn't want our son [i]intubated[/i]. It was a possibility in our minds. Just offhand, among some other things.
He [i]should[/i] have been in an emergency room. [i]Hours[/i] before many of the interventions he received. If..........well, I don't like to think about [i]"If"[/i].
God was kind. But you know what they say about the innocent and the ignorant. I'm neither and I don't count on that clique'. I've seen many instances where [i]it wasn't true.[/i]
As far as we can tell, and I would put money on it, that in that particular instance his PA/Nuts any other food allergies were not the cause. We nailed the cause/mitigating circumstances down. (slapping self on forehead BTW).
"cut and dried"..........my cubs Asthma is extremely life threatening. By diagnosis, even.
ps..........PA is "cut and dried"? If it were, would there be more Policy, Protocol, Procedure, and SoP in place? You know, less [i]individualization[/i]? Don't know myself.
Just offhand:
link to Article entitled:
[b]Life Threatening Asthma Attacks May Be Triggered By Food Allergies.[/b]
The definition given re: "Life Threatening Asthma" is interesting.
Disclaimer: I am not offering advice in any manner or form. Just relaying my own *unique, highly individual, and personal* vexations. I do not guarantee the accuracy, content or currentness of the link in this post.

Posted on: Sun, 07/25/2004 - 9:45pm
MommaBear's picture
Joined: 09/23/2002 - 09:00

I mean, if you listen to the way some some people [i]rationalize[/i] PA, is it very similiar to the way some people [i]rationalize[/i] Asthma?
You know, possibly the phrases,
"Well, my child's _____ isn't that [i]serious[/i]." (or "Well, my child's _____ is [i]mild[/i].")
"My child has never [b]had[/b] a [i]serious[/i] reaction soooooooooooooo.........."

Posted on: Sun, 07/25/2004 - 9:50pm
MommaBear's picture
Joined: 09/23/2002 - 09:00

I mean:
"What do you say to other parents of Asthmatic children who don't take Asthma seriously?"
Absolutely not saying anyone here doesn't. I have no clue. Just know that I made some grave mistakes regarding *my own child's Asthma*. On multiple occasions. I would never never [b][i]Never[/i][/b] do anything to intentional bring harm to my child but Hindsight is an eye-opener.

Posted on: Mon, 07/26/2004 - 12:06am
California Mom's picture
Joined: 07/14/2000 - 09:00

One thing I didn't say when I responded before: Lately, when I meet someone who doesn't take pa as *seriously* as I do, I feel envious!!! I [b]wish[/b] I didn't feel that I had to take it so seriously. I think of the negative impact pa has on my dd's (and our whole family's) emotional well being. And I think: "wouldn't it be so much easier just to think that all we had to do to keep her safe would be to make sure she doesn't eat anything that has peanuts in it?!" I wish it were that simple.
That's when I have to do a soul search and truly believe that it is the vigilance we are raising our dd with that will keep her alive. I never want to be that parent who has to live with the knowledge that "if only I had known; if only we kept an epipen with us everywhere we went; if only we had avoided certain restaurants or may contain foods". Yes, it is the thought of death from pa that keeps me making sure pa takes a front seat in our family's consciousness.
Also, and a very big also: our allergist made us very fearful of pa right away. "life threatening and life long" was a prase I heard often in the early years of dealing with pa.
I have to assume that the parents who are more *casual* about pa have not gotten the most current info. about pa from their doctors.
I have tried, in the past, to educate - and have pretty much gotten nowhere.
I don't mean to judge anyone or make it sound like they are bad parents. Heck, their lives are a whole lot easier than mine right now!

Posted on: Mon, 07/26/2004 - 12:34am
saknjmom's picture
Joined: 04/02/2003 - 09:00

I had an experience with a mom at the beginning of Kindergarden this year. i was looking for some support from other PA parents and had learned from my son that another child in his class had a peanut allergy.
So, I called the mom, who i had met and spoken to at pickup and orientations. I said, are you aware of the school's policy regarding the EPI pen and went on...
She asked my why my son had an EPI pen. I was confused and said, doesn't your child have a peanut allergy?
She stated that he did, but that he has only swelled up and wheezed a little when he has eaten it and that she didn't have an epi.
Then, she asked me if i thought he should have one?
I didn't even know what to say. I suggested that she speak to her doctor about it and that sometimes each reaction is worse than the one before.
She now has an epi, but her comfort zone is much different than mine. I think that she hasn't made the effort to really learn about it since he hasn't been in a life threatening situation...yet.
Another of my acquaintances has a three year old who has had mild reactions to PB. He was skin tested and was positive. She continues to feed him PBJ.
I couldn't help but ask her why she continues to feed him something that makes him itchy and if she isn't afraid that he will eventually have a really bad reaction.
I guess that until you actually see your child in the trauma and distress of an anaphalactic reaction, you can't imagine or even fathom it.
I think that doctors need to take more responsiblity in this area. They need to provide information to parents whose children test positively to life threatening allergies.

Posted on: Mon, 07/26/2004 - 4:01am
momma2boys's picture
Joined: 03/14/2003 - 09:00

saknjmom, well her comfort zone may not be the same as yours, but at least you got her to carry an epi-pen. It may save his life someday.

Posted on: Mon, 07/26/2004 - 10:18am
Anonymous's picture
Anonymous (not verified)

California Mom, sometimes you and I think so much alike, it's, well, uncanny. [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img]
I was thinking last night when I made the post after momma2boys' post about the PA parents of the child in Ember's class this year. They just seemed so "laid-back". We did discuss PA a couple of times but I just got the feeling from them (they are dealing with a couple of other food allergies with him as well) that it was no big deal. Do you know what I mean? (See, I can't say KWIM unless I put DYKWIM and I don't know if that's okay [img]http://uumor.pair.com/nutalle2/peanutallergy/eek.gif[/img] )
Now, appearance wise, I may very well come across as laid-back as well, I'm not sure, but in discussing my son's PA, I wouldn't say that I ever sound casual or laid-back about it. I don't sound stressed (I don't think) but I do sound serious and I do know that I want people to hear me and hear how serious Jesse's PA is.
Then, when typing that, I think, but ya, you don't talk to anyone about Jesse's PA except people here. It's true. The only other person I even mention PA to on a semi-regular basis would be my DH. Can't even say how often that would be.
The last discussion was over a week ago. He had been telling me about a discussion he had re PA with his sister who we are moving close to (oh joy, oh bliss - and perhaps yes). I was extremely clear with DH that if we were in their home and I did not feel okay about something, I would be leaving with the kids. He was totally cool with that.
But see, the sheer bliss (if you will) of not having had to deal with family for SIX YEARS aside from perhaps an annual visit. Of course, there were many downsides to being completely isolated from family as well and obviously, the pros outweighed the cons when I made the decision to move closer to both my MIL and my SIL (and her DH, and three children).
Perhaps it's simply people's dispositions to begin with. I know the TNA Mom from last year at Jesse's school, she was such a bright, sunshine-y person that perhaps even TNA (with anaphylactic reactions) wasn't enough to darken her day ever or take the smile from her face. I don't know. Then again, I only saw her during school hours and who knows how each of us is 24/7?
The death thing. Hadn't thought about that in quite some time. Yes, use the words life-threatening and severe here quite a bit but Chrikey, the death thing.
Is it something that we block?
Can you imagine living 24/7 knowing that your child could die because of a stupid peanut?
Or are we all doing that somehow? And what are the coping mechanisms for doing that exactly?
How is it that we're not all wigged out individuals?
Dammit [img]http://uumor.pair.com/nutalle2/peanutallergy/rolleyes.gif[/img] another question.
Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]


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