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Posted on: Fri, 11/14/2003 - 4:33am
MeCash's picture
Joined: 04/18/2001 - 09:00

Welcome Riley'smom:
It can be both scary and shocking to get the PA dx. Two of my kids are PA. Luckily, we haven't had to experience anaphylaxis and I'm very sorry you had to go through that!
As for restaurants, we always take the EpiPens, do as much advance research as possible (this board is GREAT for that) and always, always ask for ingredient lists.
In my experience, Chick-Filet's are out, Burger Kings around here are no-no's, some Wendy's aren't okay either. It's hit or miss on most fast-food, except McD's. But some McD's are sloppier than others, so always keep your guard up anyway!
Check out the Main Discussion Board, Off Topic and Living with Peanut Allergy, as well as Recalls/Alerts. There are some members here who have been PA all their lives and can give you a perspective on what it was like to grow up PA. It's not as bad as you think. As a parent, you get used to reading all the labels and asking the questions when you're out and sooner or later, you'll be needing advice to deal with the schools. All of that is addressed in different forms from different people with a lot of experience with PA.
Kids are adaptable and they're life isn't ruined because of PA. It's going to be a little different, they have to be taught extra caution, but it'll be their world and they will be okay with it. Much harder on us big people set in our ways! [img]http://uumor.pair.com/nutalle2/peanutallergy/biggrin.gif[/img]
Welcome to PA.com and good luck!
[This message has been edited by MeCash (edited November 15, 2003).]

Posted on: Fri, 11/14/2003 - 9:14pm
loiny's picture
Joined: 11/10/2003 - 09:00

Hi Rileys mum. Whilst I'm afraid I can't be much help to your questions (I only just found out 2yr old daughter has pa) I couldn't help smile regarding your "boy in bubble" reference.
When I was told about my daughters allergy last week, I started freaking out. Once I calmed down (she has only had a hives reaction so far), one of my friends said I was starting to sound like she was going to have to live in a bubble.
Everything associated with allergies is just soooo overwhelming. I think you have made a great start by coming in here. I have found out heaps in just a week.
Just by reading peoples questions and seeing the responses has been informative.
I think all the memebers need a big pat on the back for their continued willingness to inform/help others.
P.S. It isn't just restaurants I fear. We went to my sons school fete today. When we got home dd had hives on her backside. I gave her clarytyne straight away and she was fine. Silly me who is still new to all this didn't think to take her medication with me. I feel she was actually biten by something but you just never know unfortuneatly (sp ?). Because of her age, anything dropped on the ground is a possible threat. While I can control what we buy her to eat, I can't stop any dropped peanuts or "unknown little treats" on the ground at a fair etc.
P.S.S. It is because of this site, that I actually feel lucky. Not lucky because I have a daughter with an allergy, but lucky she is not as severe as she could be. Mum always said to me when growing up. "there is always some worse off than yourself". This site proves it !

Posted on: Sat, 11/15/2003 - 1:18am
Peg541's picture
Joined: 12/29/2002 - 09:00

Hi Riley's mom,
Welcome and I am glad you found us. That's the good news.
My son is 18 and has had PA forever. He is a freshman in a University 83 miles from home and is doing very well, food and all.
Now for the bad news. Unfortunately your child DOES have to be the child in the bubble. Just some of the time. You don't have a choice. You saw anaphylaxis right? Maybe you saw a part of anaphylaxis but it can get much much worse and even fatal.
That fact alone was enough for us to do all we could to keep our son safe and at the same time teach him how to live his life with PA. We succeeded thus far but accidents happen.
He is always on guard. He eats only a few things and is thriving. He KNOWS there are things he will never be able to do and he accepts that because he has also seen and felt anaphylaxis and never wants to experience that again.
So he is not banging his head against the side of his bubble in anger, he is just living his life as best he can with the limitations he has.
Luckily he has a serious aversion to most of the foods he is allergic to so he has never yearned for the "forbidden fruit." Yes, his life is small in some ways but in many other ways his life is exciting and full of promise.
Loiny mentioned that there is always someone else worse off than you. Well, that is true but due to the cumulative nature of peanut allergic reactions that person could be you any day! Just a few hives now could soon become full blown anaphylaxis.
My son's airway closed down from an airborne reaction. The peanuts HAD been in the room for the class before his but the airborne residue remained apparently. He spent last Halloween in the emergency room. When he was a baby he would only have a few hives and that eventually progressed to where we are today.
Believe what Melaine says, it's their world and they will be OK with it.
I don't mean to give you all bad news but we have to treat this like the important thing it is. Our responsibility is to educate ourselves and our children, plus those around us. Some day we have to let go of these children and that can only happen after we have done our very important job.

Posted on: Sat, 11/15/2003 - 7:33pm
loiny's picture
Joined: 11/10/2003 - 09:00

Peggy, too true about it could actually be my daughter any day. Please don't think I am treating her allergy lightly, I just meant whilst some days I think I have it bad with dd, there are alot more people with many more severe problems in this site. It helps reminding myself of this when I start to think poor me. This is just a personal thing . Sometimes I need a mental kick to just get on with things.
I know only too well about anaphylaxis. I had an anaphylatic reaction to a medication over a year ago. There was absolutely no warning as I had only just completed the course of antibiotics and had only taken the first tablet from the next course. Low and behold, boooom. Within half an hour I was in hospital (thankfully my husnabd was home at the time).I had no clue what was happening , only that the intense itch I had in my nether regions was WRONG. I thought I must have been bitten by something so I rushed to the shower (worst thing I did said the ambo.). By the time I got out I was bloated , red and could hardly talk/breathe. I insisted my husband call an ambulance (he was like, ohh you will be alright). Do you know what really peevedd me . When I went back to my g.p. they said the hospital had reported my incident as an asthma attack. I just looked at her. I think I know what an asthma attack is (have had several), and I can't say hives, bloating and turning red have been part of it. My son was around 3 1/2 yrs and daughter was almost 2 yrs. It was a very scary thing for them to witness (On a brighter note, I was able to come home after midnight and be Easter Bunny).
Anyway,education I think, is the biggest part of pa. When I tell my friends about the "may contain nuts " on packaging, they all said "oh that's just so the manufactures can protect themselves legally". It started to get frustrating. Having facts to retort back has been my answer to gently hit them on the head about the serverity of this allergy.
Let us know how things are going Rileys mum.

Posted on: Sun, 11/16/2003 - 6:56am
MommaBear's picture
Joined: 09/23/2002 - 09:00

Quote:Originally posted by loiny:
[b] I just meant whilst some days I think I have it bad with dd, there are alot more people with many more severe problems in this site. It helps reminding myself of this when I start to think poor me. This is just a personal thing . Sometimes I need a mental kick to just get on with things.
(I'm just posting a link to a thread on the boards in what may be deemed shameless plug for a thread I started a while back. [img]http://uumor.pair.com/nutalle2/peanutallergy/tongue.gif[/img])
Great Thread, IMPHO. [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img]
Disclaimer: WRT "the Thread", I may be a bit biased. [img]http://uumor.pair.com/nutalle2/peanutallergy/biggrin.gif[/img]

Posted on: Sun, 11/16/2003 - 11:58am
loiny's picture
Joined: 11/10/2003 - 09:00

Thanks for directing me to the thread mommabear. Even though you should now send me some toothpicks to hold up my eyelids (3 pages long indeed ;-) ) I mostly feel better about my statement.
I will have to admit, I did have a chuckle to myself while reading all the posts. Gwar certainly had some issues on his shoulders.
Thankyou again.

Posted on: Sun, 11/16/2003 - 12:52pm
MommaBear's picture
Joined: 09/23/2002 - 09:00

Quote:Originally posted by loiny:
[b]I will have to admit, I did have a chuckle to myself while reading all the posts. Gwar certainly had some issues on his shoulders.
[i]SAY IT ISN'T SO. [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img][/i]

Posted on: Tue, 02/18/2003 - 1:09am
cynde's picture
Joined: 12/10/2002 - 09:00

Hi, and welcome. Sorry you have to be here, but it's a great source of information and support. The trusting manufacturers is a very personal, comfort zone thing. Some do, some don't. I want the manufacturers to tell me if the product is made in a nut free facility or on a dedicated line. If it is not, I hesitate and consider our history with that companies products. My son almost died eating a cheesecake that had nothing on the label about PN, then I found out that they used a lot of them in their various forms in the facility, but did not label because they considered their cleaning procedures sufficient.

Posted on: Wed, 02/19/2003 - 1:16am
Jeannine's picture
Joined: 12/31/2002 - 09:00

As Cynde said trusting manufacturers is a personal and comfort zone thing. I was strongly urged to call the same manufacturer a few times in the same week/month and speak to a different person each time (they could be working from different information sources). After the first round of calls a monthly check-in should be sufficient. So far I've found that speaking to people actually located in the manufacturing department to be the most knowledgable.

Posted on: Tue, 02/24/2004 - 11:44pm
Lisa V's picture
Joined: 03/12/2002 - 09:00

Sounds like you better change allergists. You know what you are doing - trust yourself, and protect your child. Welcome to the boards - you will get a lot of good information here.


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