thoughts on my plan. It may be too lax for some so i\'m ready for all answers

Posted on: Thu, 05/03/2007 - 5:46am
My2girls's picture
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Joined: 04/12/2007 - 09:00

ok...PA DD dx at 3.8yrs old....has been ingesting peanuts prior to the day her eyes swelled up-red and hivey. (which means at age 3 i gave her nuts and all was well)

benedryl worked.

skin test pos...wheel histime hive was smaller than control wheal, but there, nonetheless, and it came up quickly.

blood test not back yet-but who cares really about that for now.

i am comfortable (i think...maybe...perhaps....) with the following:

nut free house;
no may contains;
epi pens all over the place-in everyone's possession (school, camp, me, nanny, nana, grandpa's house, and each person will have at least a jr twin pack and benedryl);
allowing may be processes at a plant that also processes peanuts on it's machinery.

(she has been touched several times with peanutty hands and thus far, no skin flare ups or hives)

will make everyone around her diligent in watching her physical signs and all will know about the first signs (eyes red, etc)

will administer epi pen only if airway issues (lips, tongue, breathing)and call 911

benedryl if only red itchy eyes/hives.

will give her bracelet to wear at all times

i am on the fence about cupcakes at parties. if the mom made them i will ask about nuts? if store bought, not sure.

go ahead--be gentle, but how does this sound (please, no alarmists, like, ok if you want a dead DD)....

Posted on: Thu, 05/03/2007 - 6:17am
krc's picture
krc
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Joined: 01/16/2007 - 09:00

Since you asked.... [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
I am uncomfortable with allowing may contains or manufactured on the same equipment. I know you state she ate nut products before her reaction but that was just that....before diagnoses.
Just because her first reaction was "only" eye swelling and hives does not mean the next reaction will be the same. Our reactions became increasingly more severe (I told you our story on another thread).
Otherwise, you are doing great! You've been given ALOT of info in a short period of time and I'm sure it's alot to process.
ALso, did your allergist give you an allergy action plan? The form can be downloaded off the FAAN website and gives a detailed set of instructions for those taking care of your PA dd in case of an allergic reaction.
------------------
10 yo dd- PA,TNA, tests pos to soy, CATS, many environmentals, Asthmatic
5 yo dd- NKA, avoiding nuts
3 yo dd- outgrown milk/soy, avoiding nuts

Posted on: Thu, 05/03/2007 - 6:21am
My2girls's picture
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Joined: 04/12/2007 - 09:00

not sure if i got an action plan...i will log onto faan site and see what one looks like..for now-we all know to epi and call 911...we all know to avoid as much as we can and we are all learning how to read labels
i won't do may contains-think you read my post wrong..i know how you feel aboiut processed at plants, but i think i may allow that...i have to see what haunts me at night before i go to bed, where i do all my thinking.

Posted on: Thu, 05/03/2007 - 6:36am
Anonymous's picture
Anonymous (not verified)

Your doing great at accepting all this so quickly. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
I do have a suggestion, and that's about the *processed in the same plant* foods. You might want to call the specific companies and verify just exactly what they mean by that. It might mean peanuts are in the plant but precautions are taken to lower (eliminate?) the risk of cross-contamination. But, it [i]might[/i] mean no precautions are taken and it even runs on the same machinery. Different companies use different labelling, so it's best to call and check.
Also, in case this hasn't been mentioned to you, no warning doesn't mean anything. There is no law requiring that *may contain* or *processed with* be put on a label. So, unless you know the companies policies, if it doesn't say anything, it's best to assume it's a may contain or call the company to check.
Also, just realized, regarding the epi-pen, did your doctor specify when to use it? For me and my son I basically follow the rules of breathing difficulty or drop in blood pressure I would use the epi-pen. Some people also include vomiting or diarreah, or any two body systems involved. Since this is medical advice (as opposed to eating advice) I would suggest you talk to your doctor about it.
But, honestly, it sounds like you are doing a great job. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Posted on: Thu, 05/03/2007 - 6:49am
saknjmom's picture
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Joined: 04/02/2003 - 09:00

You're a lot further than I was on day two. Fantastic. You are doing great!
The problem with cupcakes from other homes is that some cake mixes are cross contaminated (dunkin hines no good), I use Betty Crocker. Concerns with cross contaminations in their kitchens...
Don't be surprised if you are limited on the number of epi pens you can get in a range of time. Also, look at the expiration date while you are at the pharmacy counter. Do not accept one less than a year to expire.
The twin pack has a training pen that you can use to teach with.
Yes, clarify with your doctor (if you haven't already) about when to use epi pen. For us, if there is no known ingestion, give benadryl for itching/minor hives. If any symptoms progress ie: more hives, difficulty breathing, vomiting, loss of consciousness give epi.

Posted on: Thu, 05/03/2007 - 6:53am
My2girls's picture
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Joined: 04/12/2007 - 09:00

thanks..yes-she gave me a paper that said what to look for when deciding benedryl or epi-i have that at home and will, of course, committ it to memory-but basically, my understanding was that eyes and hives ok but if it affects airways-lips-tongue-breathing=>then go EPI....
so for just itchy eyes i would do benedryl...
i'm not happy about what you said, if no label, don't buy unless you call...have to take time to digest that one [img]http://uumor.pair.com/nutalle2/peanutallergy/frown.gif[/img]

Posted on: Thu, 05/03/2007 - 7:02am
saknjmom's picture
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Joined: 04/02/2003 - 09:00

I am probably one of the very few here who does not call manufacturers.
I mostly read the manu. thread, if it says may contain, processed in a facitlity, I don't buy.
I guess that somehow became part of my comfort zone thing....I'm actually somewhat ashamed that I'm not more careful on this part b/c ds did have full blown ana reaction once.
I'm pretty much tight on the zone beside that.

Posted on: Thu, 05/03/2007 - 7:36am
Beth V's picture
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Joined: 01/15/2000 - 09:00

Hi,
I have been dealing with this for approximately 7 years and here is what I am comfortable with:
1. No May Contains
2. No Manufactured on the same equipment
3. I do give on occasion Manufactured in
the same facility BUT it is not an
everyday thing.
4. I read labels on every trip to the
grocery store. I have found that things
change very quickly with labels.
5. If I don't see the label I do not give.
6. I do trust approx. 3 friends. They are
my eyes when I am not there.
7. I especially try to make my son feel
that he is not different. I explain
that everyone has "something". We eat
in restaurants (I call first), go to
parties, camp and sleepovers. His
emotional well being is ALMOST as
important as his physical well being.
8. I can count on one hand the number of
times I have called the company
regarding a product. I do trust the
labels. The only problem I have had
was with PUBLIX ice cream. The bold
print said : eggs, milk, soy and the
third ingredient was peanut oil. I did
call the company for that and they said
it was refined oil which they don't have
to mention. I now read all ice cream
labels.
9. I always have backup snacks for my son
at school in case something is brought
in with a nut product. Kisses, (I am so
thankful for Hersey's), and cookies.
That way he always has something.
That's about it. I am always worried but I try to keep it in perspective. There is a school trip next week which I am going on because they are going to Cracker Barrel for lunch. My son is almost 10 but not quite ready to ask for managers and to question like I do. We are going to go to a Cracker Barrel before the trip so I can look at the menu and ask the manager for suggestions. The trip is at a different location but I am sure he can give helpful
hints.
Enough for now. I hope this helps.
Beth

Posted on: Thu, 05/03/2007 - 7:53am
Sarahb's picture
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Joined: 01/22/2007 - 09:00

I agree...you are going great...but here is the but...
Allowing items that are processed in a facility or on shared lines is allowing your daughter to eat peanuts. I have seen different studies and percentages...and from memory I think is a 12.5% chance of having peanut protien if processed in the same plant and 18% if made on the same lines. I would not take this risk.
Cupcakes at parties. I bring my own.
BUT I don't let me son who is 3 and half eat anything from anyone but me or DH. NOT EVEN AN APPLE. How do you teach them that it is ok to eat this -- but not that-- when they are so young? I have an easy firm rule. He only eats food from me or DH. PERIOD. And I am teaching him about reading labels, asking questions, etc....how I do it. He is curious and learning but the rule is that he only eats food from me. PERIOD. You really can not trust anyone but yourself in this.
Ok...cupcakes at parties...how many people actually bake them themselves. Not many. Most get them from a supermarket or local bakery and both are high risk for cross contamination. IMO.
[img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] you are doing great though and this does suck sometimes for sure. Hang in there!

Posted on: Thu, 05/03/2007 - 8:22am
mcmom's picture
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Joined: 06/15/2004 - 09:00

ITA with the poster above - especially at such a young age, you have to be consistent. If you allow cupcakes at parties, then it will get confusing. We also have the rule, no food unless from home, ever period. It works. Our school nursing staff has told me many times that they feel this is the correct thing to do.
I personally would never allow my PA son to eat a cupcake baked in anyone else's home. Who can tell what was baked in that pan the last time, or how well they cleaned their kitchen the last time they had the pb out? And as already stated, there are brands of cake mix that are not safe for PA. Best tip I ever got when I was new to PA: Bake a batch of your own cupcakes and freeze them. They keep really well for months, and whenever you need one you can pop one out, put on some safe frosting (Betty Crocker), and off you go. The defrost very quickly. We *always* have cupcakes in our freezer [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
Also agree about the "manufactured in" labeling - that is a no for us. Once you start reading the manufacturer's thread, you will see there are *many* safe options for cookies, candy, etc.

Posted on: Thu, 05/03/2007 - 8:35am
lilpig99's picture
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Joined: 12/22/2005 - 09:00

Quote:Originally posted by My2girls:
[b]thanks..yes-she gave me a paper that said what to look for when deciding benedryl or epi-i have that at home and will, of course, committ it to memory-but basically, my understanding was that eyes and hives ok but if it affects airways-lips-tongue-breathing=>then go EPI....
so for just itchy eyes i would do benedryl...
i'm not happy about what you said, if no label, don't buy unless you call...have to take time to digest that one [img]http://uumor.pair.com/nutalle2/peanutallergy/frown.gif[/img][/b]
Research the companies that label well. You will find lists here of ones that are generally known to be forthright in their manufacturing process--ones that will label for may contains every time--as companies are not required by law to do this, they are only required to label for what IS in their products. It's up to you whether you want to feed your daughter something from a company that you are not familiar with. Many feel it is not okay, many feel alright about it. All of these questions you are asking, is helping you define your comfort zone. Sometimes it is easiest to just really tighten everything up at first--until you can clearly assess the risks of certain behaviors. Over time you may loosen your comfort zone, or you may not.
For our family, we use only companies we know label well, it feels safe to buy a product with a may contain soy label on it...shows they care...we're not allergic to soy. If I find something i want to try from an unknown company, we find out what other products are in their line, call and ask the most important questions--"is this product made on a DEDICATED line" (as in NO other product is run down that line)?? and for some, "do you have nuts in your manufacturing plant?"..."are products with nuts run on the same line as x product?". Many companies will just tell you they wash the lines...that is not acceptable to many here, for some it is. It will be obvious to you which companies are more dedicated to allergic individuals.
Take care! You're doing great.

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