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PostPosted: Wed Mar 16, 2011 4:08 pm 
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Joined: Thu Feb 26, 2009 12:05 am
Posts: 642
Location: AB, Canada
Just want to comment on the 'reaction can be fatal from smelling peanuts'. I have read extensive medical journals about the topic of airborne particles and reactions (before DS travelled by plane). Although there have been reports of allergic reactions, and many ana people will feel extreme nausea (which I believe is a protection mechanism), I don't think there has been a case of an anaphylactic reaction caused by airborne particles to date. I could be wrong.

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PostPosted: Wed Mar 16, 2011 4:26 pm 
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Joined: Wed Aug 15, 2007 1:40 am
Posts: 423
Location: Alberta, Canada
Your right I have never heard of anyone having a fatal reaction but is it fair to be in a position to have hives feel sick to stomach heart pounding and eyes puffed. This has happened to me (on more that one occasion including on an AC flight) no it did not kill me but one should not have to deal with this when it can be avoided. My heart goes out to that family, it kind of feels like a segregation type of situation. "we don't want your kind here" It's just ugly. It takes education for the people who have no experience with allergies.

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Me-Allergic to Peanut, Tree Nut, Coconut, Shellfish, ASA and Asthma
My Husband and Children No Allergies


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PostPosted: Wed Mar 16, 2011 6:50 pm 
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Location: AB, Canada
I agree that it is an unfair situation for the child, but I think if parents(/Drs?) exaggerate for effect it only ends up hurting their cause.

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PostPosted: Wed Mar 16, 2011 8:17 pm 
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Joined: Fri Oct 10, 2008 9:40 pm
Posts: 2034
Location: ottawa
Quote:
I agree that it is an unfair situation for the child, but I think if parents(/Drs?) exaggerate for effect it only ends up hurting their cause.

I totally agree Becky .


It also seems difficult in this case to separate fact from fiction as far as all these extreme measures. Were all these measures in fact implemented for all students or was there specific circumstances (eg. a child arriving to school with peanut butter reside on on their face or eating pb at school for lunch) to explain the mouth washing for example. The letter sent out on behalf of the family did imply that the accusations were incorrect and exagerated. So how much is truth I can't even guess.

All I know is that is is disgusting how intolerant and hateful this group of parents are being. You would THINK that no matter the issue parents would want to sit down and say 'hey, this isn't working, you explain your side and we'll give our side and lets work together'.
And IF these extreme measures are all true and implemented by the school board I find that unfortunate as as Becky said it actually hurts the cause more than helps.

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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: Wed Mar 16, 2011 8:57 pm 
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Joined: Sun Nov 30, 2008 11:00 am
Posts: 1119
This situation just made me think that it would sure be helpful for parents new to anaphylactic allergies to be partnered with an experienced parent. Families with multiples (twins/triplets) do that and it can work really well to have someone who has truly Been There Done That and can answer your questions no matter how crazy they may seem. Parts of this Edgewater story make me wonder if the little girl is newly diagnosed --- personally, I acted very differently at that stage than now.

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


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PostPosted: Wed Mar 16, 2011 9:44 pm 
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Joined: Mon Jul 05, 2010 11:37 am
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Location: Alberta
walooet wrote:
This situation just made me think that it would sure be helpful for parents new to anaphylactic allergies to be partnered with an experienced parent.


What a wonderful idea! :bouncyblue This could probably be done.

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Myself - Seasonal, cats
dd-asthma (trigger - flu) anaphylactic to eggs, severe allergies to bugspray and penicilin,pulmicort
ds-Seasonal, cats and OAS
dh-allergy cats, bugspray and guava, outgrew egg allergy


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PostPosted: Wed Mar 16, 2011 10:24 pm 
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Joined: Thu Feb 26, 2009 12:05 am
Posts: 642
Location: AB, Canada
The partnering is interesting, but I have 2 comments about it.

1) I personally didn't find the multiples group terribly helpful, since everyones experience & dynamic is so different.

2) Ditto above. And people have vastly different expectations. The first thing I did after our diagnosis is call people I know who are living with anaphylaxis (parents of various aged kids). Some of the advice I was given (by people who I would have said take allergies very seriously) was:
* When you go to DQ ask them to wipe off the equipment first
* If you get something at Tim Hortons, make it as plain as possible (ie plain donut, white roll for sandwich)
* When buying bulk rolls at the grocery store, don't get any with seeds.

Had I followed the advice blindly, I would be approaching how will live with PA very differently (easier but riskier). Other than members here, the majority of people I talk to, whose kids have known anaphylaxis, do not avoid may contains.

The best resource I've found for info, knowledge & support is right here. :D

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PostPosted: Thu Mar 17, 2011 12:42 am 
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Joined: Mon Jul 05, 2010 11:37 am
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Location: Alberta
Oh my, Becky, that sounds like very scary advice to me and I am very happy you don't follow it. So I guess the best thing to do is exactly what we have been doing - Spread the word about this forum and magazine. :huggy :thumbsup

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Myself - Seasonal, cats
dd-asthma (trigger - flu) anaphylactic to eggs, severe allergies to bugspray and penicilin,pulmicort
ds-Seasonal, cats and OAS
dh-allergy cats, bugspray and guava, outgrew egg allergy


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PostPosted: Thu Mar 17, 2011 7:25 am 
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Joined: Fri Oct 10, 2008 9:40 pm
Posts: 2034
Location: ottawa
To quote Walooet:
Quote:
Parts of this Edgewater story make me wonder if the little girl is newly diagnosed --- personally, I acted very differently at that stage than now.

I have wondered the exact same thing also from my own personal experience and how I acted/reacted 3 years ago.


To quote Becky:
Quote:
Other than members here, the majority of people I talk to, whose kids have known anaphylaxis, do not avoid may contains.The best resource I've found for info, knowledge & support is right here.

I wonder why this is, I too find that almost all allergic folks I happen to meet eat at places I'd never even attempt to with ds and also eat 'may contains'. When chatting it does seem that many of these people's kids have been tested but never reacted, not saying these kids don't have real allergies, maybe unless you've seen a reaction you have no idea what you are playing with. ??? Who knows. But like Becky's experience the best advice, knowledge I too have received has been right here.

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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: Thu Mar 17, 2011 9:51 am 
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Joined: Tue Mar 22, 2005 11:17 pm
Posts: 6456
Location: Ottawa
OK, so what if a group affiliated with Anaphylaxis Canada (they have a trained "Speaker Bureau") contacted you a week or so after the inital diagnosis and offered to visit you and discuss issues and provide reputable information and links? The public health nurse does this for new moms and infant after discharge form the hospital.

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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: Thu Mar 17, 2011 9:56 am 
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Joined: Sun Nov 30, 2008 11:00 am
Posts: 1119
_Susan_ wrote:
OK, so what if a group affiliated with Anaphylaxis Canada (they have a trained "Speaker Bureau") contacted you a week or so after the inital diagnosis and offered to visit you and discuss issues and provide reputable information and links? The public health nurse does this for new moms and infant after discharge form the hospital.
:goodidea

That is a great idea Susan! I remember the Public Health Nurse calling and it was nice to ask some questions of someone 'in the know' despite having so many people providing advice at the time. And with the allergies, there were so few people that could help us. I still remember the shock with the first epi-pen prescription and then moreso with the later discovery of peanut and tree nut. That really was a challenging time. This support has been invaluable on the forum but majority don't know it is here and not everyone is comfortable with a forum.

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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 Mar 17, 2011 10:12 am 
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Joined: Fri Oct 10, 2008 9:40 pm
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Location: ottawa
Quote:
OK, so what if a group affiliated with Anaphylaxis Canada (they have a trained "Speaker Bureau") contacted you a week or so after the inital diagnosis and offered to visit you and discuss issues and provide reputable information and links? The public health nurse does this for new moms and infant after discharge form the hospital.


LOVE that idea. People could have the option to say no but I bet most would love having someone to talk to who they could trust to have accurate information. If a face to face visit was to $$ it would be great if families were even supplied with a contact, (like the buddy system) an email/phone number to offer direction now and then.
I was given a paper with websites but the problem with a piece of paper with a few web links I found was that I was already so overwhelmed and there was SO much information I didn't know where to start. Especially with the very basic what to do immediately to keep ds safe.


I volunteer to be a buddie :thumbsup

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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: Thu Mar 17, 2011 10:25 am 
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Joined: Sun Nov 30, 2008 11:00 am
Posts: 1119
BC2007 wrote:
Quote:
...I was already so overwhelmed and there was SO much information I didn't know where to start. Especially with the very basic what to do immediately to keep ds safe.

...

I volunteer to be a buddie :thumbsup


Totally agree on being overwhelmed with SO much information.

:goodidea about being a buddie! Me too!

Does anyone know how other buddie programs are set up with health issues?

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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 Mar 17, 2011 10:48 am 
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Joined: Thu Feb 26, 2009 12:05 am
Posts: 642
Location: AB, Canada
Wonderful idea Susan!!!

I didn't mean for my post to come across as such a downer, just sharing my experiences. A GOOD allergy buddy would be wonderful. :)

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PostPosted: Thu Mar 17, 2011 12:08 pm 
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Posts: 1119
Becky - to me, your post was REAL and not a downer. There is a lot of misinformation out there which is frightening.


After the Buddie System (need a cool name...) and the Ribbons could we please work on an exchange program for high school students to stay with families with allergies that get it? :huggy My teen would love to do an exchange but I cannot imagine it unless it is with a family who lives with allergies. I know, I know, ahead of myself but a girl can dream. :mrgreen:

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


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