Talking Allergies

I just received the new issue of Todays Parent and they had an article in it about Peanut allergies. It tells about a parent going through finding out her daughter is allergic to peanuts and then soy it is a really good article except they were saying that there is not alot of help out there for people in this situation. They mentioned the anaphalaxis network but they did not mention this site which i figured is one of the best sites to help out with allergies. I thought that they would have this on the website but i checked it out and it's a no go. If you don't have or get the magazine it is a really good article and talks about the problems with allergies.

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Daughter Ana to Cashews, Pistachios

i think it's a matter of a lot of peope don't know where to look for support

one of my co-workers mentioned her friend had peanut allergy and i gave her this website cause i figure she'll find some good resources the reason they may not have mention this site is that it's for another magazine and they may not want promote a competing company

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allergies - penicillin, benadryl, dust mites, enviornmental & chemical
conditions - dermatographism, eczema, well contorolled asthma
dietary - lactose intollerant, vegatarian

Wow - it's too bad we don't have any resources in Canada for doctors to point people to. What's up with that?

Sorry, I'm being sarcastic. But it frustrates me that more medical specialists and generalists don't point their patients in the direction of support. I have come to accept that doctors and allergists do not have the time or resources to provide support themselves, but why can they not provide at least a list of up-to-date web sites and/or phone numbers for their patients? It could be a one-pager to at least get people started.

I know that some docs DO do this, and I am very thankful to those who care enough about their patients to provide this info. But obviously not ALL of them provide that info.

All the allergists in Canada that belong to the CSACI received a copy of the new national guidelines, courtesy of the CSACI. So they theoretically know that these guidelines exist. And if people can get to the www.allergysafecommunities.ca website, they will have access to many more resources.

Support groups and orgnizations can't target the entire general community to let them know they are out there... it is very costly to do that kind of advertising.

But the docs who are the first point of contact sure can point people in the right direction if they want to.

Some people might ask: "But why don't these support groups and lay organizations TELL the doctors about their existence?" Speaking from my own experience: in 2004-2005 we sent at least 8 letters and notifications to local allergists, and some STILL didn't know who we were or what we did at the end of that time period. And they weren't telling their patients about us. You can send a letter to the horse, but you can't make him/her read it.

Sigh.

K.

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Karen, proud Mom of
- DS1 (12 yrs): allergic to cashews, pistachios, Brazil nuts, potatoes, some legumes, some fish, pumpkin seeds; OAS
- DS2 (1o yrs): ana. to dairy, eggs, peanuts; asthma

Maybe we should start here:
http://www.cma.ca/index.cfm/ci_id/3295/la_id/1.htm

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Moderator
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

Here is the article online:

http://www.todaysparent.com/toddler/hea ... 60&page=1#

One of my group members sent the link to me.

Now I'm upset with the magazine as well - this is a Canadian magazine that points people to American resources. I realize that the family that is profiled is in the U.S., and I am happy that they consulted with Dr. Deena Mandell (see her study at http://www.anaphylaxis.org/pdf/Mandell.pdf ) and Dr. Susan Waserman, former president of the CSACI.

But I do not understand why their research didn't point them to the new anaphylaxis guidelines and the Allergy Safe Communities website, and why they didn't mention FAAN's Canadian counterparts - AAIA, Anaphylaxis Canada, and in Quebec, the French-language AQAA.


K.

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Karen, proud Mom of
- DS1 (12 yrs): allergic to cashews, pistachios, Brazil nuts, potatoes, some legumes, some fish, pumpkin seeds; OAS
- DS2 (1o yrs): ana. to dairy, eggs, peanuts; asthma

Karen, that's unbelievable. I'm not a journalist and I found all these resources quite easily. They must not have dug very deep, or even look very hard.

May I suggest that perhaps, with all your credentials, you could write them a letter to rectify and to add to the article? People in Canada need to know we have resources right here.

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15 year old - asthmatic, allergic to cats, dogs, horses, waiting to be "officially" diagnosed for anaphylaxis
12 year old - asthmatic, allergic to tree pollen and mold, OAS
Husband - Allergic to amoxycillin
Self - Allergic to housework only

The letter is written.

I am just running it by a cooler head before I send it. LOL.

K.

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Karen, proud Mom of
- DS1 (12 yrs): allergic to cashews, pistachios, Brazil nuts, potatoes, some legumes, some fish, pumpkin seeds; OAS
- DS2 (1o yrs): ana. to dairy, eggs, peanuts; asthma

Why would they profile an American family also? There are lots of Canadian families who could provide insight to what is happening here in Canada. I subscribe to the magazine because of the Canadian content. We haven't got it yet. A Canadian family might have listed some of the resources we are familiar with and talked about Sabrina's law.

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11 year old daughter -- lives with life-threatening allergies to milk, eggs and peanuts; seasonal allergies (birch, maple, ragweed); pet allergies; asthma; and eczema
9 year old son - no allergies

I know... that was one of the main points in my letter.

K.

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Karen, proud Mom of
- DS1 (12 yrs): allergic to cashews, pistachios, Brazil nuts, potatoes, some legumes, some fish, pumpkin seeds; OAS
- DS2 (1o yrs): ana. to dairy, eggs, peanuts; asthma

I agree that as a Canadian magazine, they should have included Canadian resources. That's the editor's job (not really the writer's fault) to think of when packaging the article for her readers. It should have been there as a sidebar and was a rather big oversight. Good to hear, Karen, that you've written a letter.

I'm going to be a little bit contrary, though, on the story itself. I think it is a good profile, especially considering that Today's Parent has a general audience, so most are those who aren't living with allergies. The story does make the unitiated stand inside this mother's shoes, it raises awareness in the mainstream, and it gets beyond the basics of the seriousness of allergies. It addresses a lot of the anxiety issues, the effects on a marriage, the concerns about being over-concerned. Lots of the stuff that Allergic Living also covers and that the editors here find interesting and complex.

It's really too bad about the resources slip - it would have been so easy to include the Canuck resources in a boxed item: allergysafecommunities.ca, Anaphylaxis Canada, AAIA, yeah, this forum and our magazine. To those who mentioned, no we're not in competition as such with Today's Parent. Allergy is something they'll visit now and again amid a myriad of parenting issues. I think you're just dealing with a case here of poor packaging on the part of the editors.

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Allergic to soy, peanut, shellfish, penicillin

I have yet to read the article...but how fantastic it would have been for them to even just list this magazine and forum -- there are so many resources listed within this forum including many not listed above (like Medic Alert, shopping resources, etc.). Support (or the lack of it) is a big issue facing allergic families and Allergic Living acts as a life-line for so many. I hope they decide to print your letter Karen, and give a spotlight to Allergic Living too.

I picked up the magazine for this article, and like everyone else was a bit miffed as to why they would focus on an american family (although it did state she was original from Canada). Besides that I did think it was pretty well written for the mainstream as Gwen mentioned talking about the effects it has on our lives. I was also happy to see the mention of another allergy (sesame) and not just having it focused on peanut. HOpefully it'll make a few more people aware:)

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4ye old DD allergic to sesame, peanut, raw egg , and mulitple environmental & seasonal allergies

2 yr old DS -no known allergies!

My problem with the article, Gwen, is that there is a real risk that it will heighten everyone's anxiety without offering any real hope or way of assuaging that anxiety. And there's lots of hope and info out there.

I guess I'm looking at it from the point of view of someone a few years into the journey, but for me, it is critical to let parents of newly diagnosed kids know that yes, it is challenging, but it IS do-able - and things will improve if you avail yourself of the resources out there.

So for me, it really missed its chance to help people and to inform people -- general public or FA parents -- that resources are available. Imagine those parents who are worried that their kids have an allergy. Or who get a diagnosis a month or two from reading that article. They're going to freak. It didn't need to be like that.

K.

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Karen, proud Mom of
- DS1 (12 yrs): allergic to cashews, pistachios, Brazil nuts, potatoes, some legumes, some fish, pumpkin seeds; OAS
- DS2 (1o yrs): ana. to dairy, eggs, peanuts; asthma

Hi gang -

Here's the letter I sent to the editor:

K.
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Dear Editor:

Unless I am mistaken, Today’s Parent is a Canadian magazine, is it not? I always thought that was a point of pride with your publication.

I ask this question because of your article “Life on the Knife Edge: Kids with Severe Allergies”, published in December 2006.

I was pleased to see the article mention FAAN, which is a wonderful U.S. resource. However, as the parent of two allergic children living in Canada, the leader of the Ottawa Anaphylaxis Support Group (OASG), the moderator of the “Talking Allergies” online forum (hosted by Allergic Living, a Canadian magazine), an active member of the Canadian allergy community, and a former subscriber to your Canadian magazine, I was extremely disappointed to see that your article provided almost nothing in the way of Canadian resources.

Canada actually has a great deal of resources for those with life-threatening food allergies. Given that part of your article focussed on how overwhelming and bewildering it can be when the initial diagnosis is made, I would have thought Today’s Parent would want to help Canadians in that situation. Instead, your article only compounds the problem by continuing the impression that there is little out there for Canadian families dealing with life-threatening food allergies.

Here are some of the resources (in alphabetical order) that my local support group points new members towards when they first join:

- Allergic Living: www.allergicliving.com
The only Canadian magazine that focuses solely on allergic issues, Allergic Living also has an excellent website with current research information, as well as the Talking Allergies discussion forum ( www.allergicliving.com/forum ). It has an excellent resource page for those wanting more info about Ontario’s Sabrina’s Law (also known as Bill 3, An Act to Protect Anaphylactic Pupils) at www.allergicliving.com/feature.asp?feature=41 .

- Allergy/Asthma Information Association / Association d'information sur l'allergie et l'asthme (AAIA): www.aaia.ca
A Canadian registered charity, the AAIA is dedicated to helping people deal with allergies and asthma and to help them live as fully productive lives as possible. The AAIA publishes newsletters and brochures, sells numerous resources, and hosts conferences, among other activities.

- Allergy Safe Communities: www.allergysafecommunities.ca
This website provides information and resources to help non-medical people better manage anaphylaxis. The content is based on the new national anaphylaxis guidelines titled Anaphylaxis in Schools & Other Settings (also available in French), which was developed by the Canadian Society of Allergy and Clinical Immunology (CSACI) in collaboration with the Canadian Allergy, Asthma & Immunology Foundation (CAAIF) and the following patient allergy associations: Anaphylaxis Canada, the Allergy/Asthma Information Association (AAIA), and the Association québécoise des allergies alimentaires (AQAA).

NOTE: This web site is the most important thing that a magazine such as Today’s Parent can link to. If people can find their way to this site or its French version at www.securite-allergie.ca, they will find a host of Canadian resources!

The U.S. doesn’t yet have national anaphylaxis guidelines. We should be promoting ours!

- Anaphylaxis Canada: www.anaphylaxis.org
A national non-profit organization dedicated to helping people with life-threatening allergies, Anaphylaxis Canada was a major force in the passing of Bill 3 (Sabrina's Law) in Ontario. Visit their website for resources for educators, kids’ website, products, and to sign up for eBulletins through the Canadian Anaphylaxis Registry. Members receive eBulletins and a quarterly newsletter.

- Association québécoise des allergies alimentaires (AQAA): www.aqaa.qc.ca
Based in Quebec, the AQAA provides support and information, promotes education and prevention, and encourages research in food allergy and anaphylaxis.

The AQAA also administers a national Certified Allergen Control (CAC) program for optimal allergen control in processed foods. Visit the CAC website ( www.certification-allergie.com ) for more information and to sign up to receive notices about safe food products for allergic consumers.

- Food Allergy and Anaphylaxis Network (FAAN): www.foodallergy.org
The largest food allergy association in the world, FAAN works to raise public awareness, to provide advocacy and education, and to advance research on behalf of all those affected by food allergies and anaphylaxis. The content is American-based, but it may be useful if you plan a trip to the United States in the near future. Includes American food labeling information – search the site for Food Allergen Labeling and Consumer Protection Act (FALCPA). FAAN has many resources for sale.

- Health Canada and the Canadian Food Inspection Agency: www.inspection.gc.ca/english/fssa/labet ... erge.shtml
This website provides information and downloadable brochures about the top 9 priority allergens in Canada. The brochures are also available at the OASG meetings. You can register at the site to receive food advisories, warnings, and recalls specific to your allergen(s).

- Kids with Food Allergies (KWFA): www.kidswithfoodallergies.org
Based in the U.S., KWFA is a very active online support group for those with food allergies. Some parts are free while other areas require paid membership for access. KWFA has members from all over the world with a lot of experience and a lot of allergies! It’s a very helpful resource for those with multiple food allergies.

- Ottawa Anaphylaxis Support Group (OASG): www.ottawaasg.com
The OASG has monthly meetings featuring educational topics and informal support, a lending library for members (books and videos), and a website with current information and links to many other resources.

By the way, I am pleased that you focussed on how challenging it can be for mothers and fathers to find a mutually workable approach to their child’s allergies. This is a very common problem in FA families and one on which there hasn’t been much research done. Well done to have consulted Dr. Deena Mandell about this – she is one of the few specialists out there who has tackled this area of FAs.

You should be aware that there are some resources for dealing with the psychological aspect. In fact, I have tried to ensure that my group’s web site points to some useful books, studies and articles that deal with the psychological impact of severe allergies. From our Web Links page at http://ottawaasg.com/OASG2006/modules.p ... =Web_Links , users can access numerous links dealing with the Psychological Effect of FAs (including the study done by Dr. Mandell).

I welcome your response to my comments, and I hope that you will consider providing some of the links above in your online article. Better yet – do a follow-up article in your magazine on the very many Canadian resources that are out there for Canadian families. That way, when someone’s child is diagnosed with a food allergy, a friend or family member who has read your magazine can offer them some hope, rather than looking at them with pity and secretly thanking God that it isn’t them.

It is very challenging to deal with life-threatening food allergies – especially at the beginning – but it can be done. My two boys have over 10 food allergies between them – at least four of them potentially life-threatening, but the resources that we have available to us have helped us in our “allergic journey”. And the 75 member families of my support group will attest that the OASG and the other resources we recommend has helped them as well.

By the way, feel free to check out my sons’ web site at www.epi-man.com to read about the food allergy super heroes they have created called Epi-Man and Epi-Man Jr. The site shows how our family has found ways to cope with their allergies, do some advocating, and even have fun at times.

Best regards

Karen

[etc.]

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Karen, proud Mom of
- DS1 (12 yrs): allergic to cashews, pistachios, Brazil nuts, potatoes, some legumes, some fish, pumpkin seeds; OAS
- DS2 (1o yrs): ana. to dairy, eggs, peanuts; asthma

Karen, as always - wow!
It's a great letter - not that that surprises me. They will definitely see the missed opportunity.

And I do follow your point that TP could have left a much more positive sense of all the resources available, especially for the newly diagnosed.

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Allergic to soy, peanut, shellfish, penicillin