Very new to this - help please

Posted on: Mon, 01/22/2007 - 10:26am
Sarahb's picture
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Joined: 01/22/2007 - 09:00

So we are fairly certain that my 3yo son has a PA. We are going to an alergist tomorrow - but were told that they cant do tests since he had benedryl yesterday. I wanted to start the process though. We got a scrip for epi pens and have those on hand. What do I do now? He is sleeping? What do I give him for dinner? I have no idea how reactive he is.....or what products are not good. I do have a friend whose son is allergic to many items and have always been sympathetic and paid close attn to how they have to manage their lives...but now it's my turn and I feel clueless. My son is in a preschool...not peanut free. ???

When didn't give him any pnut until he was 3 and then his ped told me to try it a little a day for 5 days and watch him. Well day one he didn't like it...and said "i can't get it out of my mouth" and I never gave him anymore figuring that he didn't like it so why push it. Well my husband took him to Costco - they had a snack with PB on it and ended up in the ER with a swollen face, hives, blisters, etc and Benedryl. That was yesterday. Now I have epi pens and both the ped and pharmacists where less than explanitory. So tomorrow we go to an alergist. I guess he is going to have bananas for dinner! LOL

any help or ideas would be appreciated! I have read a few threads here....and noticed that someone with PA also reacted to ranch dressing and I think my son reacted to that also once. Oh well...I love PB! Ugh...just reading these threads has got me sad, concerned, all those things.... ok I'll stop. Thanks for reading.

Posted on: Mon, 01/22/2007 - 10:39am
JodiBeth's picture
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Joined: 09/16/2006 - 09:00

I am sorry to hear this happened to you. I freaked out when I found out about my son in August (he is 2). It definitely gets easier. We do go out to eat and I cook almost everything I used to. Just check labels carefully, there is food out there. My son loves Sunbutter (made from sunflower seed). It tastes almost like peanut butter. You'll have your questions asnwered when you see the allergist.
Good Luck!
------------------
Jodi

Posted on: Mon, 01/22/2007 - 10:48am
Carefulmom's picture
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Joined: 01/03/2002 - 09:00

I would go to the FAAN website [url="http://www.foodallergy.org"]www.foodallergy.org[/url] and purchase the video "It Only Takes One Bite" and an epipen trainer (a fake one to practice with). That will really increase your confidence in using the epipen. Read all labels of everything you feed him. I would not do restaurants at first until you have got your meals at home figured out. When you do go to restaurants, bring food for him, in case you are not sure of the safety of the restaurant food.

Posted on: Mon, 01/22/2007 - 10:48am
cam's picture
cam
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Joined: 11/16/2006 - 09:00

We are new to this, too (it sounds like you may have seen that thread I started about feeling overwhelmed). I'm finding a lot of support and helpful information here, including companies whose labeling people trust (e.g., General Mills) and ideas for how to manage this in all kinds of situations. I hope you receive clear answers from the allergist, and I certainly empathize with you (also having discovered my son's allergy at age 3 after having avoided peanuts his first three years).

Posted on: Mon, 01/22/2007 - 11:14am
Sarahb's picture
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Joined: 01/22/2007 - 09:00

thank you all for your responses...yes cam I saw your thread and it along with the others has me a bit scared! I also read the "what are they thinking" thread... I have seen issues like that before I even knew about my son...we had a big family arguement about it...I can't believe that some people wont give up pnuts on a plane when it could kill someone!??! Arg...
I am wondering how helpful the tests will be? In reading the threads it seeems that there are different levels of PA. Some of the threads here are heartbreaking.

Posted on: Mon, 01/22/2007 - 11:23am
Lori Anne's picture
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Joined: 07/13/2005 - 09:00

FAAN has a lot of helpful information. Click on a lot of the links there and read up on allergies. FAAN's website is [url="http://www.foodallergy.org"]www.foodallergy.org[/url]
I think this link should take you directly to their list of things to avoid...
[url="http://www.foodallergy.org/downloads/HTRL.pdf"]http://www.foodallergy.org/downloads/HTRL.pdf[/url]
I hope that helps.
I know it's overwhelming right now. Just read as much as you can and when you have questions, please don't hesitate to ask.

Posted on: Mon, 01/22/2007 - 11:26am
cam's picture
cam
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Joined: 11/16/2006 - 09:00

I wanted to add that my son and I go to a parent-child class, and we were enrolled in the class when we found out about the PA. I panicked because we had class that week, and it is a program where parents take turns bringing the snack. I went to the grocery store at midnight and read labels on standard crackers and typed up a list of safe snacks and e-mailed it to the program director that night, and she said we could tell parents only to bring in snacks from that list (and I always get to verify it before it is handed out). I would be willing to e-mail this list to you if you want (although I have to say that at the time I did not realize that we should also go the extra step of calling manufacturers, so I am still working on that and would need to give that caveat with the list). You could even do a few searches on this board to find snacks people think are safe.

Posted on: Mon, 01/22/2007 - 11:31am
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Joined: 05/28/2009 - 16:42

Hi Sarah,
So sorry this happened to you, I know the feeling, believe me. We all know the feeling. Very overwhelming, but it can be managed. A lot of things are going to change, but having a site like this will help so much. The first thing I want to say is about how he didn't react with the first bite. A lot of children don't necessarily react with the first bite of the allergen, but every subsequent exposure makes it worse. I have 3 children with PA(peanut allergy) and TNA(tree nut allergy), and it is hard, but we manage. Found out about my son at 15 months, he is now 11 yrs. His reaction did come with the first bite. He satellites when tested, there is not measurement for his PA test.
Anyway, I hope you have a good allergist, one that throughly understands food allergies, they don't all do. I have had one tell me --Oh, don't worry, he can eat food with traces, and I wouldn't worry about carrying an epi. He will be fine"--IDIOT!!!!!That is why we drive 3 hours to go to his old allergist, we had moved and there is not one allergist here I trust. I am telling you this so you can really listen to you Dr.
Welcome!!And please feel free to ask any questions you want and you may email me any time.
Take Care
------------------
Stacie - Mother to:
11 yr. PA
8 yr. TNA
3 yr. PA&TNA

Posted on: Mon, 01/22/2007 - 11:50am
McCobbre's picture
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Joined: 04/16/2005 - 09:00

You may suggest to your allergist a blood test. You don't have to have avoided benadryl for that, and with it, you won't be exposing your child to peanut further (like the skin test will). I mean, a skin prick test (SPT) will tell you that you're allergic, but you know that. The blood test will give you a class--a number to work with (not that the number/class is a predictor of reaction).
Welcome to the boards. They're a wealth of information.

Posted on: Mon, 01/22/2007 - 12:12pm
3xy1PAinNH's picture
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Joined: 08/07/2006 - 09:00

I am sorry you have had to join us. There is a wealth of info here. I muddled around uninformed the first two years of my son's diagnosis, then when his bloodwork (RAST) numbers nearly quadrupled, I knew I was in this for the long hall, and I found this haven of info.
What you will learn here is that everyone has a different comfort zone. Some of that is based on the child's sensitivity(oral, touch,inhilation), a part of that is the parents knowledge, personality and management of their fears.
For example, not judging or criticizing, just offering an example. I consider myself 'in the middle'. There are two extremes 1) home school, never eat out, don't go out in public much and 2) dont' read all labels, don't query restaurants, eat May Contains. I am not as strict as group 1, and not as lenient as group two.
Having said that...the first mom posting gives her 2yo sunbutter. I am NOT comfortable doing that, b/c my 4 y/o does not yet have the capacity to tell the difference between sunbutter and PB...and I don't want him feeling too comfortable with something that looks and tastes so muchlike PB. When he is older and has been tested for sunflower seeds, I may try it, but not when he can't read and reason. But that mom feeds her child sunbutter, and it is no big deal for her at all...we all handle this differently....and that is OKAY. We are just trying to find a balance.

Posted on: Mon, 01/22/2007 - 1:19pm
chanda4's picture
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Joined: 12/14/2006 - 09:00

I think we all get overwhelmed at times, I do. Some days I think this is no big deal and other days I want to zip my kids inside a bubble and leave them there.
I read, read and read. Every web site I come across(this one is good) FAAN(they have a link on how to read a label, basic, but it helped me. Then new things crop up everyday, things at school, parties, play dates....but I deal with one thing at a time. Everyday I learn somthing new, really...this is an on-going learning experience and this is such a good place to start, welcome!!! I Ivisit several times and day and just read....soak it all in!
Good luck at the appt tomorrow, write down ALL your questions, try to get some good starters and the rest you will learn. It's not that bad, really, I deal with more then just peanut, and we get by. Take each day as it comes. HUGS
------------------
Chanda(mother of 4)
Sidney-8 (beef and chocolate)
Jake-6 (peanut, all tree nuts, eggs)
Carson-3 1/2 (milk, soy, egg, beef and pork)
Savannah-1 (milk and egg)

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