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PostPosted: Wed Dec 23, 2009 9:09 am 
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Joined: Tue Oct 06, 2009 11:08 am
Posts: 78
Location: Halifax
A recent incident has got me thinking about what happens to our little girl if something were to befall both her father and I. Who would take care of her, and would they even know what to do with her severe allergies? Do they even know what anaphylaxis means and how to live with it? None of our extended family know how (or bother) to read labels. So, I organized an Allergy Workshop for extended family members to educate them about anaphylaxis and my daughter's allergies. Of the entire family, seven people expressed interest. Not bad!

Everyone decided that January 2, 2010 is the best day for them and booked the afternoon off - a block of 4 to 5 hours. I am looking for any input that might help me. Ideally, what I would like to do is compile all the information I get and then put it in a package and post it online (or even here in the forum) so others can use it to educate their family members about allergies if they wish to. Here is what I have planned for the workshop so far:

- photocopies of specific chapters from different allergy books (stuff people can read at home after the session)
- videos about anaphylaxis, demonstrating anaphylactic shock and how to administer the epipen; advice on how to raise a child with food allergies; questions and answers with allergy experts
- brochures about my daughter's allergies and the different names for each allergen
- handouts about how to read labels along with clarification regarding "may contain" warnings
- a list of allergy web sites and a brief description of each
- empty containers of safe and unsafe foods to demonstrate proper label reading
- brief information about Sabrina's Law
- our anaphylaxis action plan
- brief description of our experience with daycare, restaurants, movie theatres, and various other minefield situations and warzones and how to avoid/rectify damage
- list of safe foods and where to buy them
- allergen free recipes

I am also responsible for providing all the refreshments and snacks (to make sure they are safe and to prove to others that it can taste fabulous WITHOUT MILK OR EGGS!) If you can think of anything else, please let me know. Any input is greatly appreciated.

Noha

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Daughter: ana to milk, eggs, peanuts, allergy to pet dander, asthma, eczema
Husband: ana to aspartame, shellfish, allergy to pet dander, eczema
Myself: asthma
http://www.allergymom.ca


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PostPosted: Wed Dec 23, 2009 10:18 am 
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Joined: Thu Feb 26, 2009 12:05 am
Posts: 641
Location: AB, Canada
I don't have any advice, but I just wanted to say that I think this is an excellent idea.

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DSs 7,7,9 all PA


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PostPosted: Wed Dec 23, 2009 2:33 pm 
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Joined: Tue Mar 22, 2005 11:17 pm
Posts: 6456
Location: Ottawa
Here are a couple of items you might consider:

10 things a children with allergies want you to know
http://tinyurl.com/496wuo

10 things families with food allergies want you to know
http://tinyurl.com/ylgz3uh

How a child might describe a reaction
http://www.foodallergy.org/page/how-a-c ... -reaction1

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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: Wed Dec 23, 2009 3:46 pm 
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Joined: Tue Oct 06, 2009 11:08 am
Posts: 78
Location: Halifax
Susan..

Thank you for the suggestion. I already had print-outs prepared of the "How a child might describe a reaction" and Ten things families with allergies want you to know. I was not aware of the third one however. Will make a copy of that too.

Thanks,

Noha

_________________
Daughter: ana to milk, eggs, peanuts, allergy to pet dander, asthma, eczema
Husband: ana to aspartame, shellfish, allergy to pet dander, eczema
Myself: asthma
http://www.allergymom.ca


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PostPosted: Fri Dec 25, 2009 9:09 pm 
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Joined: Fri Oct 02, 2009 8:06 pm
Posts: 217
Location: Terrebonne, Quebec
I think it's a great idea, and the only thing i'd add is an explanation on cross contamination. I find of my family members, that is the one thing that isn't understood much. I tend to use a comparison to salmonela and how everything you use to handle raw meat needs to go through a dishwasher and be sterilized before it is used on something else, and if there is any residue on the counter, it can make the apple you cut next dangerous as well. I'm just starting out in all this, but I'm having a hard time letting anyone watch my daughter while i'm away which will be hard because i'm due to have our second child in March, and she will need to spend a whold day and night with someone at least. Let us know how it goes!

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Daughter 3.5 years) - Dairy, Eggs, Peanuts, Sesame, Beef; asthma and eczema
Daughter (2 years) - Peanuts Eczema
Son (7 months) - Contact allergy to something food undetermined


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PostPosted: Mon Jan 04, 2010 8:46 pm 
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Joined: Mon Feb 07, 2005 6:39 pm
Posts: 2943
Location: Toronto
That's a great idea, Noha!

I'm always aware of the fact that in any kind of meeting, people can tune out at certain points or just fail to fully absorb. That's why it's terrific that you have take-home materials (you may want to even put these in labelled file folders so they do file them).

I also really like is that you're planning to show a video (is it the AAIA one, which I recall is very good?) I'd even stop it at points where they may have questions or where additional explanation is needed. Help them to get it.

Couldn't agree more with CAuger - cross-contamination is the tougher concept. CA, I have a similar approach to you. I say think of any allergen residues on knives, breadboards or in sinks as the equivalent of a deadly bacteria to the allergic person. If you don't live with allergies, it helps you to grasp. Or sometimes I say, think of it like raw chicken - have to clean any surface it's touched thoroughly. Latter doesn't work as well with people (aka guys) who don't cook much. They can be a little oblivious to dangers of raw chicken/raw hamburg.

All the best with it.

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Allergic to soy, peanut, shellfish, penicillin


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PostPosted: Wed Jan 06, 2010 10:21 am 
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Joined: Tue Oct 06, 2009 11:08 am
Posts: 78
Location: Halifax
OK, so I did hold the session but something very interesting happened. On that day, we had a severe winter storm in Atlantic Canada, and really driving conditions were quite treacherous. Everyone canceled except for two people, but I said I would do it anyway because that session is important to me and because if Maya was having anaphylaxis, I would take her to the hospital regardless of what weather is outside. I show up to the meeting, and to my surprise, everyone showed up including an additional person as well. I was impressed, because even though the weather was bad, those people understood how important it is to be aware of life threatening allergies and how much time it took to organize this. Besides, we're Maritimers, a little (big) winter storm doesn't stop us! :wink:

The session went very well, and there was a lot of information packed in there. They asked very good questions. I was really happy with how things progressed. During one part of the session, I pulled out a big garbage bag that I had put all the empty boxes of "safe foods" and other boxes which I've collected from friends and neighbours of "unsafe foods", and I had them practice reading labels properly, including information on the Kosher labeling system. Family members were totally excited about that. They were all astonished to learn the number of unsafe items that they had thought did not contain dairy (because there was no may contain warning or milk in the ingredients) only to find a small U Dairy written in small print on the bottom right hand corner! They all said that it really put things in perspective when they realized that none of them had ever had to do that and how careful you would have to be. I felt they really understood why my grocery trip takes two hours on average and why my husband and I work so hard to keep our daughter safe.

I will be posting the information I used on the Halifax AAG web site so that those who want to do something similar can feel free to use that same information.

Gwen, the videos I used were a collection from you tube. One was on how to administer the epipen, from the makers of Epipen. Another one was from the Mayo Clinic, and several others from promos of FAAN. I only took the parts pertaining to allergies and how families live with anaphylaxis. One video I really liked but could only find ten minutes on you tube was called "When Food Kills" but I could not find the full version anywhere. It is Australian but it's a very good video about Anaphylaxis and food allergies. This is the type of video I would actually buy. I wish we could get it here in North America. There are a few words I'd like to say about AAIA but perhaps those I should leave to an email.

Once I have the information posted online I will put the link here on the forum. And thank you all for your wonderful ideas. I could not have done it without you.

Noha

_________________
Daughter: ana to milk, eggs, peanuts, allergy to pet dander, asthma, eczema
Husband: ana to aspartame, shellfish, allergy to pet dander, eczema
Myself: asthma
http://www.allergymom.ca


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