What Would You Want to See In A Book Re PA?

Posted on: Thu, 03/08/2001 - 1:01am
Anonymous's picture
Anonymous (not verified)

pWhat would you want to see in a book re PA as either a PA parent or PA person?/p
pI would like to see personal experiences. I'd like to see correct information about the useage of the Epi-pen. I'd like to see a list of the symptoms of anaphylaxis (even though I already have a list sitting beside me here). I would like to see information re schools. Information about manufacturers and cosmetic makers./p
pAlso, I'd like to see a good resource list, complete with mailing addresses and telephone numbers, not just websites?/p
pDoes anyone else know what they would want to see in a book re PA? If you were going to the library to get a book re PA or planning to buy one re PA to either educate yourself or someone else, what would you need to see?/p
pJust curious, as always! [img]http://uumor.pair.com/nutalle2/peanutallergy/eek.gif[/img]/p
pBest wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]/p
p------------------/p

Posted on: Thu, 03/08/2001 - 10:32am
DeeJay's picture
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Joined: 07/05/2000 - 09:00

As a PA parent, I would like to see practical information such as:
How to deal with bullies in school
How boys can carry epi-pens with them (my sons refuse to wear fanny packs or epi-belts)
Dealing with peer pressure
Dating/kissing/intimate relations
I would also like a nice big chapter on how I can survive when they are older and no longer under my control and supervision. When I see TV coverage of Mardi Gras or college kids on spring break and the huge crowds, I almost get sick to my stomach thinking about what would my kids do if they were in that crowd and had a reaction. I know I am overprotective and I need to "let go" more, but that is so hard for me.
I would also like to see information about the latest research for a cure or vaccine.
Also examples of allergy management plans for schools (the ones on this website have been great).
Great thread starter, Cindy!

Posted on: Thu, 03/08/2001 - 10:44am
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Mir
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Joined: 02/12/2001 - 09:00

I really appreciate the tips/advice I've been getting from other parents with PA children, but I find that what REALLY soothes me these days is talking to PA adults. I'm not quite out of the what-if-this-kills-him stage and hearing from those who have survived to adulthood and thrived in spite of PA keeps me from becoming completely neurotic.
Miriam

Posted on: Fri, 03/09/2001 - 3:57am
BENSMOM's picture
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Joined: 05/20/2000 - 09:00

I would like to see PA discussed outside of a PA book. There should be a section on PA and other food allergies in pregnancy books and the early childhood books. It should discuss the seriousness of it. If it were mentioned regularly in these types of books, there would be more awareness.

Posted on: Fri, 03/09/2001 - 4:41am
WoozerMom's picture
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Joined: 12/28/2000 - 09:00

I would like to have a basic paragraph written in lots of different languages which we could take on trips to foreign countries.
I would like a list of safe foods.
I would like a list of people to write to improve airline compliance.
I would like to hear of how other people handle problems.
I would like a chapter for friends and family to read for basic peanut/nut allergy information.
I think that for parents of young children, there should be a thorough discussion of how to force schools into compliance, with case law citations, etc.
Carol

Posted on: Fri, 03/09/2001 - 2:39pm
chasie's picture
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Joined: 07/20/2000 - 09:00

Does anyone know of any books out there??

Posted on: Sat, 03/10/2001 - 5:49am
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Anonymous (not verified)

chasie, I know I have had a book recommended to me. It's by Lisa Cipriano Collins. However, I don't know the title. I have to ask someone. I'm sure the information is posted SOMEWHERE on this board, I'm just not clear where.
But yes, as far as I know there is her book.
Last September, I asked my local library to order some books in for me re PA, anything they could find. I received books that were older and dealt with multiple food allergies.
They were all written by doctors. Because I didn't consider them that "good" (IMHO), I didn't bother to keep the titles/authors of them around anywhere.
Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
------------------

Posted on: Sun, 03/11/2001 - 5:38am
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Joined: 05/28/2009 - 16:42

Cindy - are you taking my suggestion seriously? Best of luck if you are.
As for my two cents I think it would be most beneficial if you step back to your first diagnosis of this allergy and all the questions/fears/anxieties you had as a PA "newbie". What information is needed from a practical standpoint for new parents/sufferers. Not just the stuff we're all told about strict avoidance and how to medicate, but the other stuff about preparing well in advance for schools/outings/playdates; the trials and tribulation of educating others; discrimination and being left out; support groups; hidden sources of ingredients or the oddball places you'll find peanut (lots of places I never looked until I found this site).
Merely looking at the thread starters should give you a great base from which to start - so many questions everyone has that need answering.

Posted on: Sun, 03/11/2001 - 5:43am
Anonymous's picture
Anonymous (not verified)

Philip's Mom, you may have blown my cover in this one! Actually, right now I'm simply interested in what we would all like to see in a book. I do have to read Lisa Cipriano Collins book first.
Probably when this thread dies down, I'll come back in and try to summarize what all
of us would like to see in a book.
Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
------------------

Posted on: Tue, 03/20/2001 - 3:42am
Heather's picture
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Joined: 10/08/2006 - 09:00

I would like to see advice on what to eat and what to avoid eating during pregnancy and nursing.

Posted on: Sat, 03/31/2001 - 8:10am
Julie Marie's picture
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Joined: 03/12/2000 - 09:00

Cindy - that book you referred to by Lisa Cipriano Collins is called "Caring for your Child with Severe Food Allergies". It's a great book and has been my source of emotional support, practical advice. She writes about her son's PA. It's a great book...I think I've read it 20 times. Now that my PA daughter is starting Kindergarten I've been pouring through it (for sanity purposes as well). Julie

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