New and Frustrated!

Posted on: Mon, 05/22/2006 - 5:58am
Jen224's picture
Offline
Joined: 05/22/2006 - 09:00

We found out a couple weeks ago that my two-year-old son is PA (and it didn't surprise me at all--any one else have a weird intuition about it ahead of time?). So, besides from being totally overwhelmed and sad and the whole-nine-yards, now that I've started contacting companies, I'm adding frustrated to my laundry list of emotions. Honestly, most companies have been pretty good (friendly, responsive, and informative), but it seems like nearly EVERYTHING was made in a facility with peanuts! I called our allergist to see if maybe, just maybe, it was OK for our son to eat something that made in the facility (not IN or on the line, of course), but I got a hearty NO on that. So, this aftenoon, I get an email back from Kraft Foods that said: "If a product is made on shared equipment, every reasonable precaution, including stringent cleaning and sanitation practices, is taken to prevent cross-contact with the eight major allergens (eggs, fish, shellfish, milk, peanuts, soy, tree nuts and wheat). When contact with one of these allergens is unavoidable, then the product is labeled appropriately." What do I do with this information??!! Are all of you guys completely avoiding all Kraft products? Are you calling about each one to see if it was made on shared equipment? Do you trust that when a company as large as Kraft says it does "stringent cleaning" it's enough?

A million thanks. I can't tell you how incredibly helpful it's been reading all of your posts in the last couple weeks. It certainly makes me feel a whole lot less alone.

Jen

Posted on: Mon, 05/22/2006 - 7:01am
Anonymous's picture
Anonymous (not verified)

Welcome Jen! This is an incredible website for support and information. It's such a blessing. My impression is that some trust Kraft here but you will find that many don't...much because of the 'lack of a response' you got from them. Personally, we find Kraft hard to avoid...they have a monopoly on many things. We choose carefully after researching on this site and considering the alternatives. I believe the only Kraft items on our safe list are sliced cheese, parmesan cheese, oscar meyer prepackaged deli meat and marshmallows. But that's just us - you'll develop your own comfort zone with time. In the meantime, my recommendation is to stick with what you know, start researching slowly and adding to your safe list. Search on this site for others' safe lists to get you started.
TJsmom

Posted on: Mon, 05/22/2006 - 7:34am
Corvallis Mom's picture
Offline
Joined: 05/22/2001 - 09:00

Welcome, Jen!
Yes, I knew our daughter would have food allergies... no, not a clue what they would be... this wasn't intuition in our case so much as a firm grasp of Mendelian genetics. [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img]
Anyway, I totally understand your frustration with Kraft. We will not buy anything from them other than minimarshmallows, and those only seldom. Ohh, and we use Kool-Aid. To dye yarn. LOL!
But seriously, I consider that kind of answer to be a de facto medical decision that the company is making for us. And I have a child with a history of rxn to "made in a facility" whether or not it is on the label. She also has a history of reaction to Kraft products which are not appropriately labeled. (Jell-O is the one that has always given us trouble.) We avoid Nabisco as well because they are owned by Kraft. And yes, this takes a tremendous number of prepared foods "off the table" so to speak. That is okay. I hav told them I don't like their practices and until they give straight answers when I call, I will not give them my money. It is the only power I have.
We have developed trust in Keebler's labeling practices with cookies/crackers. They have really improved over the past few years. Leaps and bounds. But I still don't trust Kellogg's cereal.
General Mills is [i]the only[/i] company that I trust implicitly. They give all the right answers every time you call. I actually feel teary when I think of my interactions with "big G." [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] I wish we could buy more from them, and I tell them so.
I write thank-you notes for Food Allergy Awareness week and send them to companies (like valentines). This year's list included Keebler, GM, PhillySwirl, and a couple of local places.

Posted on: Mon, 05/22/2006 - 11:50pm
Greenlady's picture
Offline
Joined: 06/30/2004 - 09:00

Welcome, Jen! You'll find that there are a lot of different "comfort zones" around here, so there are a lot of different answers. Some families call all the manufacturers, some trust the labels and avoid those that "may contain" or "manufactured in", and a few just avoid obvious peanut ingredients but still allow "may contain."
For us, we trust labels, BUT my son has only had two mild reactions since his diagnosis four years ago, and both to known peanut cross-contamination. If he had had even mild "mystery" reactions I would have tightened up considerably.
Another consideration - many people feel that avoid ALL traces of peanut protein, even at levels that don't trigger an obvious reaction, greatly increases a child's chance of outgrowing. I believe that the jury is still out on that one, but for some even the possibility is worth keeping a very tight comfort zone.
My advice to your family is to start off with a very narrow comfort zone and then slowly expand it as you learn more. Don't be surprised if people in your life (even close friends and family) think you've gone off the deep end. Stay calm but firm - this is what is best for your child right now.
Hope this helps!

Posted on: Mon, 06/05/2006 - 12:02pm
Jen224's picture
Offline
Joined: 05/22/2006 - 09:00

Thank you so much for your help. I wish there was a giant list out there of "safe" and "not safe" products b/c I seem to be becoming more and more overwhelmed--instead of more accepting and chilled out about this. I keep telling myself that in a year this will all seem more natural and second-nature to us, but right now I'm having a hard time coming to terms with it. I have some sort of peanut dream every single night--sometimes my DS is literally swimming in peanuts and other times there's just a peanut shell off to the side in normal dream and only I notice it. Sigh. Anyway, I really appreciate being able to come to the site to read and digest everything. So, thank you for all your insight!
Jen

Posted on: Wed, 06/07/2006 - 12:14am
Greenlady's picture
Offline
Joined: 06/30/2004 - 09:00

It will get easier, I promise. One thing to consider - it is okay to take a break from this board. If you find reading the posts is making you more and more anxious, think about taking a break for a week or so to give everything time to digest. This board is a wonderful support, but the information can also be overwhelming.
Take care, and remember that we will always be here!

Posted on: Wed, 06/07/2006 - 6:03am
ajas_folks's picture
Offline
Joined: 04/28/2000 - 09:00

Hi Jen,
In our home we have learned to make much food from scratch where we might otherwise have depended on "convenience" pre-made food stuffs. The "Snack & Recipes" section of these boards has great ideas for foods & substitutions. Our son learned how to crack eggs at age 2, so he could help make own pancakes. (Assuming you do not have to avoid eggs & with apologies to the egg allergic here.)
You will want to always have a reem or two of printer paper on hand when it comes to PA -- tons to print up & keep as reference & to share with others (friends, family, teachers) as you try to teach them about keeping your PA child safe. Get a big multi-subject binder, set it up with categories regarding PA & the organization you give yourself will begin to give you a sense of power over the allergy . . . and possibly reduce the frustration & helplessness that can come with PA, especially at beginning of journey.
Hope this helps in some small way --
~Elizabeth

Posted on: Tue, 06/27/2006 - 1:35am
TyTurner's picture
Offline
Joined: 06/27/2006 - 09:00

I will call the resturants if I have a question, even walked out of a few...I do read the labels and "trust" what they say if they are a big corporation. If it is some unknown generic company to me I will not purchase it. I am upset about not being able to find "chees it" cheese crackers anymore. My son loved those and I didn't have to worry about there being peanutbutter in them instead of cheese, I tried the Kroger brand and when I got home I looked and it said 'Contains Peanuts'. So I was eating cheese on cheese crackers for a week. I was very disappointing it that one, not 'may contains, or made in' just plain old 'contains', like they didn't even want to spend the money to wash the line down. Okay I am done, back to the subject..just trust your gut, that has worked for me.

Posted on: Tue, 06/27/2006 - 11:16am
tarab26's picture
Offline
Joined: 06/24/2006 - 09:00

Hi, this question is for Corvallis Mom if you happen to come back to this post, In the post you made you mentioned jello gave you trouble, I was wondering how and is the allergy your daughter has with nuts? I took my 15 month old son today to the allergist and he is allergic to all nuts, but he said the bad ones were peanuts and almonds along with a bunch of other foods. im new to all this as well, and my other kids do like jello, i have not fed it to my baby yet. Let me know if you can, Thanks.

Posted on: Tue, 06/27/2006 - 3:10pm
Momcat's picture
Offline
Joined: 03/15/2005 - 09:00

If I remember correctly, Corvallis Mom's daughter has several life-threatening food allergies. Not just nuts.
But there is a nut issue with Jello Pistachio Pudding. There may be some chance of cross-contamination with other pudding or jello flavors. If you need more information, you may want to call the manufacturer.
An alternative to Jello is Knox gelatine. You mix it with juice and add your own sugar if you want. The nice thing about it is that it doesn't have all those artificial colors in it.
------------------
Mom to 7 yr old PA/TNA daughter and 3 1/2 yr old son who is allergic to eggs.

Posted on: Mon, 05/22/2006 - 7:01am
Anonymous's picture
Anonymous (not verified)

Welcome Jen! This is an incredible website for support and information. It's such a blessing. My impression is that some trust Kraft here but you will find that many don't...much because of the 'lack of a response' you got from them. Personally, we find Kraft hard to avoid...they have a monopoly on many things. We choose carefully after researching on this site and considering the alternatives. I believe the only Kraft items on our safe list are sliced cheese, parmesan cheese, oscar meyer prepackaged deli meat and marshmallows. But that's just us - you'll develop your own comfort zone with time. In the meantime, my recommendation is to stick with what you know, start researching slowly and adding to your safe list. Search on this site for others' safe lists to get you started.
TJsmom

Posted on: Mon, 05/22/2006 - 7:34am
Corvallis Mom's picture
Offline
Joined: 05/22/2001 - 09:00

Welcome, Jen!
Yes, I knew our daughter would have food allergies... no, not a clue what they would be... this wasn't intuition in our case so much as a firm grasp of Mendelian genetics. [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img]
Anyway, I totally understand your frustration with Kraft. We will not buy anything from them other than minimarshmallows, and those only seldom. Ohh, and we use Kool-Aid. To dye yarn. LOL!
But seriously, I consider that kind of answer to be a de facto medical decision that the company is making for us. And I have a child with a history of rxn to "made in a facility" whether or not it is on the label. She also has a history of reaction to Kraft products which are not appropriately labeled. (Jell-O is the one that has always given us trouble.) We avoid Nabisco as well because they are owned by Kraft. And yes, this takes a tremendous number of prepared foods "off the table" so to speak. That is okay. I hav told them I don't like their practices and until they give straight answers when I call, I will not give them my money. It is the only power I have.
We have developed trust in Keebler's labeling practices with cookies/crackers. They have really improved over the past few years. Leaps and bounds. But I still don't trust Kellogg's cereal.
General Mills is [i]the only[/i] company that I trust implicitly. They give all the right answers every time you call. I actually feel teary when I think of my interactions with "big G." [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] I wish we could buy more from them, and I tell them so.
I write thank-you notes for Food Allergy Awareness week and send them to companies (like valentines). This year's list included Keebler, GM, PhillySwirl, and a couple of local places.

Posted on: Mon, 05/22/2006 - 11:50pm
Greenlady's picture
Offline
Joined: 06/30/2004 - 09:00

Welcome, Jen! You'll find that there are a lot of different "comfort zones" around here, so there are a lot of different answers. Some families call all the manufacturers, some trust the labels and avoid those that "may contain" or "manufactured in", and a few just avoid obvious peanut ingredients but still allow "may contain."
For us, we trust labels, BUT my son has only had two mild reactions since his diagnosis four years ago, and both to known peanut cross-contamination. If he had had even mild "mystery" reactions I would have tightened up considerably.
Another consideration - many people feel that avoid ALL traces of peanut protein, even at levels that don't trigger an obvious reaction, greatly increases a child's chance of outgrowing. I believe that the jury is still out on that one, but for some even the possibility is worth keeping a very tight comfort zone.
My advice to your family is to start off with a very narrow comfort zone and then slowly expand it as you learn more. Don't be surprised if people in your life (even close friends and family) think you've gone off the deep end. Stay calm but firm - this is what is best for your child right now.
Hope this helps!

Posted on: Mon, 06/05/2006 - 12:02pm
Jen224's picture
Offline
Joined: 05/22/2006 - 09:00

Thank you so much for your help. I wish there was a giant list out there of "safe" and "not safe" products b/c I seem to be becoming more and more overwhelmed--instead of more accepting and chilled out about this. I keep telling myself that in a year this will all seem more natural and second-nature to us, but right now I'm having a hard time coming to terms with it. I have some sort of peanut dream every single night--sometimes my DS is literally swimming in peanuts and other times there's just a peanut shell off to the side in normal dream and only I notice it. Sigh. Anyway, I really appreciate being able to come to the site to read and digest everything. So, thank you for all your insight!
Jen

Posted on: Wed, 06/07/2006 - 12:14am
Greenlady's picture
Offline
Joined: 06/30/2004 - 09:00

It will get easier, I promise. One thing to consider - it is okay to take a break from this board. If you find reading the posts is making you more and more anxious, think about taking a break for a week or so to give everything time to digest. This board is a wonderful support, but the information can also be overwhelming.
Take care, and remember that we will always be here!

Posted on: Wed, 06/07/2006 - 6:03am
ajas_folks's picture
Offline
Joined: 04/28/2000 - 09:00

Hi Jen,
In our home we have learned to make much food from scratch where we might otherwise have depended on "convenience" pre-made food stuffs. The "Snack & Recipes" section of these boards has great ideas for foods & substitutions. Our son learned how to crack eggs at age 2, so he could help make own pancakes. (Assuming you do not have to avoid eggs & with apologies to the egg allergic here.)
You will want to always have a reem or two of printer paper on hand when it comes to PA -- tons to print up & keep as reference & to share with others (friends, family, teachers) as you try to teach them about keeping your PA child safe. Get a big multi-subject binder, set it up with categories regarding PA & the organization you give yourself will begin to give you a sense of power over the allergy . . . and possibly reduce the frustration & helplessness that can come with PA, especially at beginning of journey.
Hope this helps in some small way --
~Elizabeth

Posted on: Tue, 06/27/2006 - 1:35am
TyTurner's picture
Offline
Joined: 06/27/2006 - 09:00

I will call the resturants if I have a question, even walked out of a few...I do read the labels and "trust" what they say if they are a big corporation. If it is some unknown generic company to me I will not purchase it. I am upset about not being able to find "chees it" cheese crackers anymore. My son loved those and I didn't have to worry about there being peanutbutter in them instead of cheese, I tried the Kroger brand and when I got home I looked and it said 'Contains Peanuts'. So I was eating cheese on cheese crackers for a week. I was very disappointing it that one, not 'may contains, or made in' just plain old 'contains', like they didn't even want to spend the money to wash the line down. Okay I am done, back to the subject..just trust your gut, that has worked for me.

Posted on: Tue, 06/27/2006 - 11:16am
tarab26's picture
Offline
Joined: 06/24/2006 - 09:00

Hi, this question is for Corvallis Mom if you happen to come back to this post, In the post you made you mentioned jello gave you trouble, I was wondering how and is the allergy your daughter has with nuts? I took my 15 month old son today to the allergist and he is allergic to all nuts, but he said the bad ones were peanuts and almonds along with a bunch of other foods. im new to all this as well, and my other kids do like jello, i have not fed it to my baby yet. Let me know if you can, Thanks.

Posted on: Tue, 06/27/2006 - 3:10pm
Momcat's picture
Offline
Joined: 03/15/2005 - 09:00

If I remember correctly, Corvallis Mom's daughter has several life-threatening food allergies. Not just nuts.
But there is a nut issue with Jello Pistachio Pudding. There may be some chance of cross-contamination with other pudding or jello flavors. If you need more information, you may want to call the manufacturer.
An alternative to Jello is Knox gelatine. You mix it with juice and add your own sugar if you want. The nice thing about it is that it doesn't have all those artificial colors in it.
------------------
Mom to 7 yr old PA/TNA daughter and 3 1/2 yr old son who is allergic to eggs.

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