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PostPosted: Wed Jun 23, 2010 7:44 pm 
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Joined: Sun Nov 30, 2008 11:00 am
Posts: 1117
cauger wrote:
This may sound horrible, but I wish there was a video of a child having a severe anaphylactic reaction to something available so that we could show people a REAL person having REAL symptoms..


I agree completely. I've told people every detail of my daughter's anaphylactic reaction to a trace of a tree nut and that seemed to make them understand!

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me: allergic to crustaceans plus environmental
teenager: allergic to hazelnuts, some other foods and environmental


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PostPosted: Thu Jun 24, 2010 7:07 am 
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Joined: Fri Oct 10, 2008 9:40 pm
Posts: 2034
Location: ottawa
I agree, it is exactly what a friend of mine said who is an E.R. trauma nurse, she said anyone who witnesses a full anaphylactic reaction will never question allergies again.

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DD 12 yrs -no allergies
4 yr old DS - asthma/eczema Anaphylactic to Peanuts, all tree nuts, sesame , all pea/lentil legumes, gelatin.
Allergic to trees, grass,ragweed, feathers, dander, mold and dust.
Outgrew eggs, fish, shellfish


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PostPosted: Fri Jul 16, 2010 8:11 am 
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Joined: Wed Jan 13, 2010 9:30 am
Posts: 49
unfortunately even seeing a child have a severe allergic reaction doesn't change some people. My sister is an ER nurse as well, and she is the one who wouldn't give up peanut butter for a week for my daughter. :scratchy Some people will just never get it...

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DD: 11/19/08 allergy to eggs and peanuts


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PostPosted: Fri Jul 16, 2010 7:12 pm 
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Joined: Tue Mar 22, 2005 11:17 pm
Posts: 6455
Location: Ottawa
gertiegirl wrote:
unfortunately even seeing a child have a severe allergic reaction doesn't change some people. My sister is an ER nurse as well, and she is the one who wouldn't give up peanut butter for a week for my daughter. :scratchy Some people will just never get it...

:frightened Oh my!

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Daughter: asthma, allergies to egg, milk, peanuts, tree nuts, most legumes (not soy) & penicillin. Developing hayfever type allergies.
Husband: no allergies
Me: allergies to some tree that flowers in May
Cat: allergic to beef, pork and lamb


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PostPosted: Fri Jul 16, 2010 8:34 pm 
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Joined: Fri Oct 10, 2008 9:40 pm
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Location: ottawa
Gertiegirl, As this is your sister you are talking about I won't say what is fully on my mind. I will say your family situation last week was appalling. My heart really goes out to you and your DD and husband. To know your sister is an RN makes it even more.........the most polite word I can use is disturbing. That really puts things into a better perspective, it wasn't and couldn't be a misunderstanding or a lack of knowledge/education with regards to anaphylaxis but a lack of consideration which led your family to put a few pb&J sandwiches/granola bars over your daughter's life.
WOW WOW WOW! :frightened

Have you heard from your family since the event regarding your decision not to attend family functions until they put your daughter's health first??

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DD 12 yrs -no allergies
4 yr old DS - asthma/eczema Anaphylactic to Peanuts, all tree nuts, sesame , all pea/lentil legumes, gelatin.
Allergic to trees, grass,ragweed, feathers, dander, mold and dust.
Outgrew eggs, fish, shellfish


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PostPosted: Sun Jul 18, 2010 9:55 pm 
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Joined: Wed Jan 13, 2010 9:30 am
Posts: 49
BC2007.. I haven't talked with any of my siblings since we got back from Florida.. it's just good I live so far away from them.. ;) They are all in the states, mostly the midwest... so we don't have to do many family things.. mostly the big ones. We will be going to Colorado in a couple weeks to stay with my dad.. and even though they don't completely get it, I feel a bit better there, as I feel he is more sensitive to what I ask, even though he just thinks I'm overprotective... he will be more accomodating for us.. though we have discussed staying at a hotel for the week, the cost just wasn't in the budget..

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DD: 11/19/08 allergy to eggs and peanuts


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PostPosted: Mon Jul 19, 2010 6:24 am 
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Joined: Fri Oct 10, 2008 9:40 pm
Posts: 2034
Location: ottawa
Gertiegirl, have a wonderful stay with your dad. I hear Colorado is beautiful. Your dad might at first may accommodate your requests not fully understanding them and thinking you as over protective. Once he spends some quality time with your adorable DD and gets a more complete understanding of her anaphylaxis I bet those heart strings will be pulling and he'll soon be the one jumping in front of her when a stranger comes up to touch her hand. :lol:
As for the rest of your family, you did what you needed to do. I would hope that anyone's family who doesn't get to see a little niece or nephew too often would jump at the chance be accommodating in order to spend every second with them. But I guess life doesn't always work as we would like.

The reality is that compromise isn't something those of us dealing with life threatening allergies (especially when it is our children we are talking about) are willing or able to throw on the table.
Enjoy the rest of your summer!!!!

_________________
DD 12 yrs -no allergies
4 yr old DS - asthma/eczema Anaphylactic to Peanuts, all tree nuts, sesame , all pea/lentil legumes, gelatin.
Allergic to trees, grass,ragweed, feathers, dander, mold and dust.
Outgrew eggs, fish, shellfish


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PostPosted: Mon Jul 19, 2010 9:53 am 
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Joined: Tue Mar 22, 2005 11:17 pm
Posts: 6455
Location: Ottawa
BC2007 wrote:
The reality is that compromise isn't something those of us dealing with life threatening allergies (especially when it is our children we are talking about) are willing or able to throw on the table.
Enjoy the rest of your summer!!!!


True! I've been told that I am too rigid and that I should be willing to accomodate others more. That I am too black and white. :freak This is from someonewho obviously has no understanding of severe food allergies. I simply say, "No. It's my way or the highway. That may sound hard and it can be at times but it has to be. I will not accept the alternative."

The good thing about family events in the summer is that it's also prime camping season!

I'm glad your dad is more accomodating. It sounds as if you have your mother, at least one sister and you dad educated to some extent. They can lead the way for the others. It takes a long time for extended families to get with the program. The first step is a willingness to accomodate. :thumbsup

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Daughter: asthma, allergies to egg, milk, peanuts, tree nuts, most legumes (not soy) & penicillin. Developing hayfever type allergies.
Husband: no allergies
Me: allergies to some tree that flowers in May
Cat: allergic to beef, pork and lamb


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PostPosted: Mon Jul 19, 2010 10:58 am 
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Joined: Mon Feb 07, 2005 6:39 pm
Posts: 2943
Location: Toronto
Wow, this is a powerful thread. S, can you link from Facebook? It's a topic that resonates for (unfortunately too) many of us.

Lisa's post about her brother gave me a little choke-up (I'm close to my brother too).

BC2007 re your:

Quote:
With each news article that casually mentions de-sensitization it leaves a very confusing message for those not dealing with allergies. It sounds like on the surface that all we need to do is start to feed allergic people bits of what they are allergic to and voila, cured.


I fear this is true, that's why Allergic Living (and me in particular) end up writing articles debunking reports in the media (the JAMA study http://www.allergicliving.com/columns.asp?copy_id=400, Chatelaine, the Harvard allergy 'hysteria' fellow). It frustrates me: why can't people accept the reality of this condition, as verified by expert researchers? But never fear - AL will keep plugging away on. Part of our advocacy seems to have become: reality check on the media.

Despite the other Gertiegirl's sister :( - also agree with BC2007 on:
Quote:
My friend who is a trauma RN said that if anyone saw a person in full anaphylactic shock they would never doubt allergies again.


This does make converts out of 'doubters'.

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Allergic to soy, peanut, shellfish, penicillin


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PostPosted: Fri Sep 17, 2010 9:53 am 
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Joined: Mon Sep 19, 2005 6:31 pm
Posts: 61
Location: Ontario
Hi all,

I'm writing a story for Allergic Living on close relatives who don't "get it" and this thread certainly reminds me why we need to spotlight troubling stories about families and severe food allergy every few years.

If anyone would like to contact me through email with an anecdote about a certain family misstep or two, you can reach me at mcarolynblack@rogers.com

Please provide as much detail about the situation as possible, how you felt, whether things have improved or worsened, or you can email me with your phone number so we can discuss it at your convenience. The stories can be about a child's or an adult's allergy and the problems trying to trigger that 'light bulb moment' with extended (or even immediate) family.

Looking forward to reading your stories, thank you!

Carolyn Black


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