Differing Comfort Zones ... How do you feel?

Posted on: Mon, 06/16/2008 - 4:19am
ctmartin's picture
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Hi, Everyone,

I posted recently about my search for a preschool for my daughter, and during this search I have come across some very *interesting* observations/interpretations about PA. More than one of the preschools I have spoken with said something along the lines of "oh yeah, we have experience dealing with PA kids ... some of them are even serious so we have their epi pens." SOME are serious? I don't get it??

I know that everyone has their own comfort zone, and it has to be one that he/she can be happy with. I believe there must be others out there like me that have questioned their own comfort zones from time to time.

Just this morning I met a woman, and we got to talking about preschools. I am still on the fence about sending my daughter anywhere, because they all seem to have the same set-up: even though my daughter will not be there for lunch, they all have an optional lunch served in the classroom and they are not peanut free.

So I mentioned my daughter's peanut/sesame allergy to this woman and, lo and behold, her daughter has multiple food allergies as well, including peanut, soy and wheat. When I asked her how she felt about the kids eating lunch in the classroom (and probably peanut butter), she said she hadn't really thought about it! Of course she also told me she has no epi-pen at school!!

WHAT GIVES?! She seemed to me to be a pretty intelligent woman and has a daughter close in age to mine (hers is turning 4 and mine is 2 1/2).

My allergist basically recommended a peanut free school for my daughter, however that is not possible as there are none in our area. We all know that that is the best option, but am I being too concerned in worrying about peanut residue in the classroom?

This woman's daughter has had one reaction in the two years she has attended ... apparently, she got ahold of a goldfish cracker ... and the woman felt the school handled it well by calling her immediately. It was resolved with steroids.

I guess I just want to know about comfort zones ... how did you arrive at yours, why, etc? Do you find educating yourself about PA is a mixed blessing?? And what is with these other parents who deem their children to have a not so serious peanut allergy that they don't even need to have an epi pen on hand???

The only other mother I know locally with a peanut allergic child is quite similar in outlook to this woman ... when I asked if she was finding it easy to keep her son reaction free, she said, "pretty much, but i did forget to bring his epi pen when we went to PF Chang's for Mother's Day." !!!!! At least she has one, I guess ...

Posted on: Mon, 06/16/2008 - 5:28am
anonymous's picture
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You have hit on something here. Comfort levels do seem to vary from parent to parent. I am not sure if it is because of the doctor. Or maybe the parent just seems to have a different attitude.I have run into the same problem.
My oldest child is peanut, tree nut, and eggs. My youngest child is peanut, shellfish, and eggs. Both have asthma and are at a greater risk of anaphylactic shock because of the asthma. So when my husband and I found out about my first child's food allergies (by mistake, he had homemade ice cream with eggs), it scared us to death. We had no idea what was happening. After his pediatrician and allergist gave us the epi-pen and told us how serious this was, we decided we better do some research.
The doctors were really good about giving us information to read. They told us about FAAN's website. We asked questions and they were more than willing to listen and answer.
My comfort level is low because of the severity of my children's alleriges and my youngest son being in the hospital twice for respiratory distress. My theory is to better be safe than sorry. I have seen my oldest son have 3 anaphylactic reactions from eggs. I have seen him have 2 contact reactions from peanuts. That was enough for me. Really the first reaction was enough for me to know that I had to educate myself so that I would not inadvertenly kill him by giving him food.
I read an article recently about a woman that the doctors did not stress enough to her how serious her son's peanut allergy was. She was given an epi-pen and told how to administer it, but they never said "hey he could die." She did not know about "cross contamination" or "may contains" or "processed on the same machinery" and was not prepared. Her son died because he was playing with other people who had eaten mixed nuts are her super bowl party. She simply said she wished she had known.
There are 2 other children at my son's school that have multiple food allergies. One mother lets her son eat chocolate bars and does not stress about the epi-pen. The other mother has never seen her son have a reaction to peanuts, but is not going to let him sit at the peanut free table.
Then there is me. I watch my kids closely when we are out, I do not hover. I make sure they wash their hands before they eat. If I see something that I know they are allergic to, we avoid it and I explain to them why so that they will be prepared for when I am not around. Where ever my children go, their epi-pen follows. My oldest son self-advocates for himself at school and has saved himself from possible reactions. (His teacher last year was not very good at keeping him away from things he is allergic too. In fact she offered him a cupcake. If he had not known he could not have that, what would have happened!) I am very proud of my oldest son and am trying to educate my youngest in the same way.
Can you know to much about food allergies? Certainly. What you learn can be scary! Is it better to know than to just be unaware? Yes! I feel like what I have learned has kept my children safe. And in the future they will be able to hopefully keep themselves safe when I cannot be there.

Posted on: Mon, 06/16/2008 - 6:35am
niche's picture
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Yes, when I gave a presentation to the 50 or so montessori teachers and was going on about cross contamination etc. The owner mentioned that many parent have very different comfort levels she even mentioned that some parents have sent their kids allergens in their lunches.
As I have studied food allergies my comfort zone has gotten much tighter. My son's reactions have also made my comfort zone shrink.
I try to keep in mind that everyone is entitled to their own opinion but I also try to educate wherever I can as well.

Posted on: Mon, 06/16/2008 - 3:15pm
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I've noticed this too. My dd just has a pn allergy, and we're avoiding tree nuts. She's 4.
I've talked to other moms with pn allergic kids, and it's interesting to see the variety in outlooks. One mom has a kid who is allergic to other things as well, and she does not buy into the whole "peanut free" table at school. She's considering allowing her ds to sit with kids who have peanuts in their lunches (when he's old enough to be in school). Another mom (who's ds has *severe* pn allergies) told me that she has not taken her ds to an allergist, and the ped gave them the epi. She's very good about watching what he eats, warning others, etc... but then she said "if my ds has trouble breathing, I'd try benadryl first & see if that worked". GAH! You've got to be kidding me. Another mom is having trouble with the idea that she should rid her home of peanut products... "but the rest of us eat so much peanut butter-it'd be hard!". GAH!
Then again, someone may think I'm nuts-I allowed my dd to have homemade vanilla birthday cake today (made totally from scratch in someone else's kitchen). I asked the mom about peanuts, cross contamination, and it seemed legit to me, so I let my dd have it-she was fine. We still eat out... we notify the wait staff, but my dd eats off the kids menus and has no trouble.

Posted on: Mon, 06/16/2008 - 10:07pm
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It's astonishing how different comfort levels can be! I was enligtened when my DS started Kindergaten. There was another child that sat at the peanut free table for lunch with my son. Great, I was happy to find out he would not be alone. Then DS comes home a couple days later to tell me the other child was eating M&M's, so why couldn't he eat M&M's too? (Oh yes-try explaining this to a 5 year old!!!) This continued on with other itmes I would never let my DS have. Finally, I called the other Mother to see what she was like-I made some other excuse of why I was calling though. She told me that yes, she lets her child eat things like M&M's "because there is so little he can eat because he has other allergies too." (are you kidding me???gulp!) That once she let him have cake out somewhere and didn't even have his epi pen when he started to break out in hives and she had to rush home to get it. (why didn't she rush to the hospital???) Oh, and once SHE was eating something with PB and he brushed up against her and he also started to have reaction. Then I asked how they found out he had the allergy...their child almost died on a plane when he was only a baby when all the passengers opened their peanuts. He literally turned blue-they had to wrap him in ice and emergency land the plane. My jaw almost hit the floor that you see your child react to peanuts in that way and then end up with basically no comfort zone. I still shake my head to this day!
When DS started 1st they decided to put all the allergy kids together in class (more allergy kids came along since). I made it crystal clear to the teacher how differently us parents feel toward the allergy and that under no circumstance was any other allergy parent allowed to approve something for my child to eat. My fear was they were going to assume we'd all agree on what safe or not. I know that isn't true! I was to be told about all food beforehand, and the teacher did just that. All went smoothly. Keep that in mind when dealing with other people's comfort zones....just my 2 cents.

Posted on: Tue, 06/17/2008 - 12:11am
tommysmommy's picture
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This is such a great topic!
My son is one of three in his preschool class of 14 with a peanut allergy (there are several more PA kids, as well as those with other FA in the school as a whole). The mother of the other PA boy in his class has 1 Epi Pen at the school (I have two), yet does not carry them around in her purse while out with him (huh?) Seeing as the preschool is peanut and tree-nut free, I would think being out and about poses a much bigger risk than the preschool, but whatever. She also allows him to eat "made in the same facility," but not "may contain." The mother of the girl in his class who is PA only left Benedryl at the school becuase "her only reactions have been localized hives around her mouth." This is an Indian family who traveled home to India last summer and had the daughter see a special doctor there who apparently did some sort of therapy, and now she's cured. I hope for their sake that's correct, but I'm confused. In case you might be wondering if she actually had a doctor-diagnosed peanut allergy in the first place (there are those who incorrectly assume they have the allergy, but in fact do not), her daughter did see a doctor, and the allergy was (still is?) legitimate.
At a birthday party this past winter, I met a mom with two PA kids; the mother has a severe walnut allergy herself with Epi-Pens and everything. Now, she claims that b/c her kids' RAST scores put them each at a "Class 3" for peanut that they only need to avoid blatant peanut products, but they are allowed to eat "may contains," bakery goods, Asian food, etc. Huh?!?!? While my PA son ate the birthday cake I brought from home, her kids happily ate the ice-cream cake that the hostess had purchased from an ice-cream shop/bakery. [b]Now, here's the kicker:[/b] When I was allergy story-swapping with her and asked how she managed her own walnut allergy, she said that the key is to be extremely careful about cross-cotnamination, and went on to tell me about a restaurant experience she had in which her food was cross-cont. with walnut protein, and she needed her Epi-Pens and a trip to the ER to recover. Yet, her kids with PA (who also do carry Epi Pens) have pretty much free-range to eat known cross-contaminated foods. I JUST DO NOT GET IT. It certainly doesn't help the rest of us who are trying to make a case for how incredibly serious this allergy is.
Final story: Just yesterday, I was with my son at Burger King. Though I had read their web site's allergy statement, I still asked the girl behind the counter the usual questions (i.e., Do you use peanut oil, Are there any obvious peanut products here?, etc...). She proceeded to share with me that her 18-month-old has PA, and that she "totally understood," and was very helpful reading all the ingredients listed on their desserts (which I would never get anyway). [b]BUT THEN[/b], she told me that her son was only allergic to peanut butter, not to peanuts, b/c his [i]reactions[/i] (yes, plural) have only been to peanut butter and peanut butter crackers that his daycare "accidentally" gave him. I asked if she had Epi-Pens, and she said "NO -- HE WON'T NEED THEM UNTIL HE HAS A FEW MORE REACTIONS B/C IT TAKES A FEW REACTIONS BEFORE THEY GET SERIOUS ENOUGH TO WARRANT EPI PENS. His reactions, she told me, included swollen eyes, hives and TIGHTENED THROAT/BREATHING DIFFICULTY. I could not believe how uninformed she was. She also said they had not been to an allergist, but that they would likely take him soon. I felt my heart ache for her son, and told her as seriously as I could that she needed to reconsider the Epi-Pens and I told her also how serious this allergy was. What else should I have done? How do you stick your nose into another mother's business beyond that? Where do people get these crazy ideas about allergies? How can they not know with all the media attention, and all the kids with PA, and all the medical knowledge we now have? I JUST DON'T GET IT. Also, can someone [b]please[/b] tell me why some mothers tout their kids' RAST category (which, by the way, seems to change depending on lab, allergist, etc) like it really means something in regards to how serious the allergy is and what they can/cannot get away with eating? The mother of the PA boy in my son's class who I mentioned earlier told me his allergy wasn't that severe b/c his class was 'xyz" and his "numbers' were "xyz." ????????? HUH????????? And who are these allergists who articulate these notions to their patients?

Posted on: Tue, 06/17/2008 - 1:40am
Skywalker's picture
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Joined: 06/12/2008 - 16:10

I think you would call it medical malpractice. There are a lot of doctors that flat out give bad or dangerous advice regarding food allergies. We fired one because we called in during what appeared to us to be a reaction, but since my son didn't eat nuts specifically, then he must just be sick and it not food allergy realted. He was vomitting multiple times with red hives all over his body.
Lucky for us the Benadryl we gave him worked, but looking back we should have used the Epi pen and gone to the hospital. My son reacted to a cross contaminated product and we relied on our doctor for advice instead of educating ourselves with the best information available.
The RAST based decisions are also dangerous because they are so confusing. One would think a class 1 is less sensitive or severe than a class 6, but that's not what the numbers mean and too often doctors don't really explain that well enough. When you see your son go into anaphylactic shock from a class 2 RAST tree nut allergy, you really don't care much about the numbers so much.
I've encountered numerous FA parents who are so lax with their precautions it makes me want to call CPS or something. But then again how many times do we see parents who let their toddlers play in a busy street? Some parents are just plain stupid.

Posted on: Tue, 06/17/2008 - 4:57am
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Joined: 03/28/2008 - 10:08

I am also amazed. Our MD office told us DD must have caught some virus after her first anaphylactic reaction when 1 year old...vomiting, hives, skin flushing but also paleness (does that make sense?), swelling, seeming to be dazed. Even though I explained she had just had a snack with PN. I wish I could remember her name and get her fired! We were so lucky. Another nurse told us we didn't really need to see an allergist because all they do is want to give shots, can't really do much else.
This weekend we met another PA child about to start Kgarten at the same school as DD. The mother said they had an epipen, but it wasn't that serious...he could be around it but just not eat it. She had not communicated anything about this allergy to the school, and may not have even now. If so I imagine he would be put in DD's class since it is PN free! This was all based on past experiences only, no testing. I highly recommended seeing an allergist.
No wonder it is so hard to get people to understand the severity of this allergy! So many misinformed people - including health care professionals. I feel many people still think they should believe everything their MD tells them and not research themselves. I have no problem at all with correcting erroneous info with others in health care. I am a health care professional and get that I don't know everything and need to become more informed before offering my 2 cents! It is much harder with other parents. I think they just don't get that it can really kill their kid.
The RAST misinformation is a challenge because I think many want to have something concrete to grasp about PA, feeling that a test is conclusive. We didn't know the classes didn't mean much until a few months ago, and I thought I was pretty well informed. Of course, misinformation provided to me. We were very strict about risk of exposure regardless.

Posted on: Tue, 06/17/2008 - 5:02am
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it's me, again. just wanted to thank you for all of your insightful responses. i guess there really are no obvious answers, though.
i used to have just one answer for this: denial. i thought that everyone who had SUPER LOOSE comfort zones (e.g. not even having an epi) were not facing the fact that this could be fatal to their child.
now i think i see another side: i think that a lot of it *could* boil down to how the allergist treats it. i know that this woman said that her allergist said avoid PN at all costs (not even mentioning anything about Xcontamination) and that's basically it (no epi). frankly, i can't even imagine an allergist NOT prescribing one.
ironically, i had contacted her allergist when my daughter was first diagnosed, but he didn't take our insurance, so we didn't go to him. i wonder if my attitude toward PA would be any different with this kind of doctor (although the doctor we ultimately chose wasn't much better ... didn't touch on Xcontamination at all, like many doctors fail to do, but at least we were prescribed an epi).
another interesting point she brought up was that she has stayed away from the internet and educating herself about her daughter's PA b/c she found it necessary (for sanity's sake) to stay off the internet in order to deal with her older son's medical problem (he has a heart problem, and she also attributes the seriousness of this with why she is not as scared about PA, relatively speaking). i guess it's just hard for me personally to understand why anyone would not want to know as much as they can about their child's medical condition, although i admit that the internet can contain some pretty scary stuff.
so, again, there is no simple answer. this woman spoke of her daughters reaction(S), and when i think about it, i just don't want to see my daughter like that more than the one time i have already, even if she is "only" having facial swelling! and i will do ANYTHING i can, within reason, to ensure that i don't have to.
this woman had gotten me excited about her preschool, but when i talked to them today, they told me that they provide the snack (again, my daughter wouldn't be staying for lunch), and that often times it is PEANUT BUTTER crackers! how on earth could i feel safe with that? i am not sure how ANY parent of a PA kid could, but to each his own.
when i wake up with one of *those* dreams, you know the kind, where your adminstering epi after epi and nothing is working, and you wake and your heart is racing and breaking at the same time, until you realize that it is 5AM and thankfully, everyone is safely asleep ... that is when you know where your comfort zone must be. so, i guess no preschool for the foreseeable future!!

Posted on: Tue, 06/17/2008 - 11:18am
Mrsdocrse's picture
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This is a great question. There are several kids at my sons school that have PA. one kid onthe baseball team who is PA mom said that she forgets his eip all the time. "he has only had minor reactions" hives... she does let him eat may conatins ect. I don't and I wouldn't let him eat "made in the same facility" either. It is frustrating sometimes because I feel like some people think that I am over reacting because that other kid can have it! and some may say that I am taking chances because although I would not let HIM have may contains... I don't mind if the kid next to him has "may contains". My son is also 7 and doesn't eat others peoples food. so that helps.. so I guess you have to do what is best for your child and let others make thier own decisions.
who ever said that Parenting is different with each of us even if there are not food allergies involved!

Posted on: Tue, 06/17/2008 - 12:25pm
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I am not surprised to see all the "tight" comfort zones here... and not to say who is right, who is wrong, everyone has a way of dealing with PA.
I do, have a extremely tight comfort zone for my 3-year -old daughter. I had been called names (good and bad) and close family and friends think I am being unreasonable. But you know what - I don't care, it's my child's life, and before she is older enough to take over her own responsibility, I am the one to take her under my wings.
I have the same issues with preschools. We live in a very small town and non of the day care and preschool is peanut free. One school showed me the peanut free room, but the moment I walked out the door, saw the lunch menu on the door clearly says "PB sandwich" - well, the director was speechless and I said "thank you, and good bye!"
She is now "home school" by me- someone who has two full time jobs, not including being a mommy (the third full time job.) and all sitters come by the house goes thr. emergency/epi pen training once monthly.
You are not alone, we all dealing with headaches in different part of the country, the key is to stay safe, keep the child healthy and educate those who want to be educated.

Posted on: Wed, 06/18/2008 - 7:31am
mpeters's picture
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I would definitely say that if they still plan on using peanut butter crackers for snack despite your concerns you SHOULD NOT send your child there. I was fortunate in being able to convince my daughter's preschool to go peanut free (not without tears and heated discussion) and I am proud to say they are still peanut free now, 8 years later!
Regarding comfort zones, I have posted before that I actually have two very different comfort zones for my two children.
My 10 y/o daughter (class 6 greater than 100) is extremely sensitive to contact, x-contamination etc. and goes anaphylactic. Our comfort zone for her is super tight. She is on a 504 at school. She has a peanut free classroom and eats at a peanut free table. She carries an epi 2-pack plus a back-up in my purse. She does not eat may contains, we leave places when peanuts appear, we are careful about her friends and where she goes. We are seriously considering a detector dog for her.
My 8 y/o son is newly diagnosed class 2. He has never had any signs of a reaction prior to skin testing(he had actually eaten 2 peanuts once before his diagnosis with no reaction). He does not carry an epi at all times (although he has one at home due to taking regular allergy shots, and I usually have one somewhere nearby because of his sister) He is allowed to eat may contains, we do not worry about cross contamination or surfaces (although we try to keep him from bringing any traces near his sister) He eats lunch next to friends who are eating peanuts. His allergist also has two different comfort zones for the kids and she does not feel he needs an epi or food allergy action plan at school even though my daughter has all of that.
So I think the varying comfort zones are also sometimes specifically linked to the individual child's history and degree of sensitivity. As well as a direct result of experience and education.

Posted on: Thu, 06/19/2008 - 6:48am
ctmartin's picture
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hi, mpeters,
that is very interesting about your differing comfort zones for your kids and it obviously works for you so that is all that matters. it just seems to fly in the face of everything
that i have heard/read about peanut allergy (i.e. that positive is positive and there really is no definitive way to predict one's sensitivity or the severity of a reaction).
so, do you think maybe he is not PA? maybe the SPT was a false positive? i am wondering about that myself, as my daughter (who had previously eaten hummus w/sesame with no problem) tested positive to sesame on a SPT, and just consumed two bites of a soy burger of mine a couple of weeks ago which contained sesame without a problem. not sure what to think of that, but we are still avoiding just to be safe.

Posted on: Thu, 06/19/2008 - 7:14am
Krusty Krab's picture
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[b]and just consumed two bites of a soy burger of mine a couple of weeks ago which contained sesame without a problem. not sure what to think of that, but we are still avoiding just to be safe. [/b]
Allowing a child to eat their allergen is not avoidance.

Posted on: Thu, 06/19/2008 - 7:17am
Skywalker's picture
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Originally Posted By: ctmartin
that is very interesting about your differing comfort zones for your kids and it obviously works for you so that is all that matters. it just seems to fly in the face of everything
that i have heard/read about peanut allergy (i.e. that positive is positive and there really is no definitive way to predict one's sensitivity or the severity of a reaction).
Positive peanut allergy is positive peanut allergy and extreme caution should always be taken because allergies do change over time. My two peanut allergic children are at different classes right now. One is a 6 the other is a 1. We treat both the same because before we even took a single RAST test, we had anaphylatic shock to a tree nut that was later tested as a class 3. Do be careful with this allergy.

Posted on: Thu, 06/19/2008 - 7:25am
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[b]My 8 y/o son is newly diagnosed class 2. He has never had any signs of a reaction prior to skin testing(he had actually eaten 2 peanuts once before his diagnosis with no reaction). He does not carry an epi at all times (although he has one at home due to taking regular allergy shots, and I usually have one somewhere nearby because of his sister) He is allowed to eat may contains, we do not worry about cross contamination or surfaces (although we try to keep him from bringing any traces near his sister) He eats lunch next to friends who are eating peanuts. His allergist also has two different comfort zones for the kids and she does not feel he needs an epi or food allergy action plan at school even though my daughter has all of that.[/b]
In my opinion, just having peanut allergy should warrant epi pen prescriptions, and I wouldn't see an allergist who didn't also believe the same. Again, the nature of peanut allergy, a pa child tends to become more sensitive over time. I believe there are studies out there on that subject, aside from the many experiences of people on the board. And not sure if you do or not, but most parents here do not allow PB in their homes with PA children.
Class II doesn't mean much to me. It is not predictive of severity. In other words, a child can (and children have) had anaphylactic reactions with class II allergies or less.
Frankly, your allergist's advice with regard to peanut allergy scares me.

Posted on: Thu, 06/19/2008 - 7:26am
ctmartin's picture
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i did not ALLOW her KNOWINGLY, sorry if i didn't make that clear! (i included that info in another post i just wrote). i was at a cookout and was SO focused on making sure there were no sesame buns being served, that i didn't think to check the soy burger, as i didn't know then, but know now, that sesame is being added more and more to this type of food. as others who deal with sesame allergy know, it is much harder to identify, as it is hidden in the ingredient list and not inculded in BOLD as one of the top 8.
my bad, but i figured it would be assumed that since i said we are avoiding, this would not have been done purposely!

Posted on: Thu, 06/19/2008 - 7:35am
Krusty Krab's picture
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I see now.
You may want to consider everything as being 'unsafe' unless it is proven so by label reading. And it's a great practice to teach your children to thoroughly read labels and why.

Posted on: Fri, 06/20/2008 - 1:36pm
mpeters's picture
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To Krusty,
That is the funny thing about having two comfort zones. Of course our house is completely peanut free, as are my mother's and sister's homes for my daughter's sake. The two peanuts my son ate were at his friend's home (without my knowledge or permission) but at that time he had been skin tested at age four and cleared as negative. It was a year after the peanut eating (his one and only ingestion) that he skin tested positive. We think he was negative earlier because we had always treated as if he was allergic and avoided direct contact or ingestion "just in case" plus to protect his sister, therefore the development of peanut specific antigens had not been triggered.
But still we wanted to be sure it was not a false positive, so we checked his IgE level and he was positive, 0.61 kU/L (actually class 3 not class 2 as I said earlier)
Honestly even the fact that I forget his level reminds me how I tend to glaze over his allergy in the shadow of my daughter's which is truly all-consuming because it affects her and her life so much.
I think the allergist feels that a history of reactions is more persuasive than testing (i.e. food challenge trumps RAST) He does have epis at home but not at school (yet), and no action plan or contact precautions. (But I of course informed the school nurse of his testing and I do work in the district, often in his building, and carry the extra epi in my purse) We go back for follow-up with the allergist next month, so we will see...
I think we will just adjust our comfort zone for him as needed if he ever starts showing signs of reactions, but he has never even had a hive, or itchy eyes or anything, and compared to our daughter who lives on a steady stream of allergy meds in every form and still is miserable much of the time, it just seems to be a completely different ball game.
I do admit that I feel a little guilty that I almost forget he is peanut allergic. I don't think to tell people etc. I think I am just so focused on my daughter's needs that I jsut don't think of it. Luckily he is old enough to speak up for himself. He saved himself from a Butterfinger at Sunday school (in our "peanut free" church) It is amazing how many people do not realize that the "butter" in Butterfinger is PEANUT BUTTER.

Posted on: Sun, 06/22/2008 - 4:07pm
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Wow. Reading the posts on this topic are what made me join this community. My wife and I learned that our 2 1/2 year old is peanut allergic just last week. We're new to all of this, so any insight you can all provide would be really helpful. I know I'm supposed to introduce myself in a different forum, and will get around to doing that.
To get back on topic ... our daughter is supposed to be starting preschool in September, and since we did not know about this condition when we applied to schools, we unknowingly enrolled her in a school that is not peanut free. There are several schools in our area that are, but all but one has a wait list now.
When I contacted the school late last week to let them know about the allergy, I was sort of put off by the reaction. It is hard to describe. On one hand, they were saying they would work with us, but on the other, they were kind of making me work for it. There was no, "OF COURSE we'll make the classroom peanut free if that's what you want." It was more like, "we'll do the minimum we need to, because you know, the other 99% of the class shouldn't be inconvenienced by this ... after you get her test results back lets sit down with your doctor and determine what is necessary." I get the feeling they're not defining "necessary" as what will make me not be a nervous wreck from the minute she sets foot in that school, which is how I was hoping they'd define it.
My gut reaction is that I cannot send my child to a school that is not 100% safe for her, and why would I not try to get her into a peanut free school when her current school is not making me feel comfortable? I can't really get behind the peanut free table. To me it seems exlusionary. And that means there are still peanuts or PB in the room potentially.
I guess my comfort level is very low. I feel like it is my job to keep my daughter away from anything that can cause a reaction for as long as I can, and that means keeping her out of a school with allergens in it, not merely at a table that doesn't have allergens on it. The school put me in contact with a PA parent of a child who is already there, and her attitude was very much like, "they need to know they're different and that they have to watch - the world is not peanut free so why would I put my kid in an artifical situation that is peanut free, when he needs to watch every minute anyway." I can see her point, but I disagree. I mean, I can teach my daughter to be careful even if her school, along with our house, is a safe zone. I don't think you need the presence of an active threat in your daily life in order to be taught to watch out for it. Thoughts?
I am still not sure how to deal with the current school, and my wife and I are still trying to decide whether we should pull our daughter out before she starts. Obviously this couldn't happen at a worse time of year, with school starting in about 2 months there aren't really any spots open at other schools. This leads me to a question for you all - since the headmistress of the current school has asked us to give her a list of things that would make us feel comfortable, and I'm probably not far enough into this to know what I really need to ask for, does anyone have any suggestions? If your non-peanut free school said they would do whatever you asked (short of making the entire school peanut free), what would you ask for? Is there anything you would want, but that you know deep down is unreasonable? Is there anything you could see the school finding unreasonable but you know, based on your experience, is imperative?
So sorry to ask so many questions, particularly in someone else's thread ... I just feel so fortunate to have stumbled upon this right as I am going through trying to figure out what to do about school, as well as digesting the fact that my daughter has this allergy. Knowing there are other people out there is a good thing.
Thanks,
Mike

Posted on: Sun, 06/22/2008 - 6:16pm
gw_mom3's picture
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Joined: 02/14/2000 - 09:00

Originally Posted By: z2566Wow. Reading the posts on this topic are what made me join this community. My wife and I learned that our 2 1/2 year old is peanut allergic just last week. We're new to all of this, so any insight you can all provide would be really helpful. I know I'm supposed to introduce myself in a different forum, and will get around to doing that.
To get back on topic ... our daughter is supposed to be starting preschool in September, and since we did not know about this condition when we applied to schools, we unknowingly enrolled her in a school that is not peanut free. There are several schools in our area that are, but all but one has a wait list now.
When I contacted the school late last week to let them know about the allergy, I was sort of put off by the reaction. It is hard to describe. On one hand, they were saying they would work with us, but on the other, they were kind of making me work for it. There was no, "OF COURSE we'll make the classroom peanut free if that's what you want." It was more like, "[b]we'll do the minimum we need to, because you know, the other 99% of the class shouldn't be inconvenienced by this ... [/b]after you get her test results back lets sit down with your doctor and determine what is necessary." I get the feeling they're not defining "necessary" as what will make me not be a nervous wreck from the minute she sets foot in that school, which is how I was hoping they'd define it.
My gut reaction is that I cannot send my child to a school that is not 100% safe for her, and why would I not try to get her into a peanut free school when her current school is not making me feel comfortable? I can't really get behind the peanut free table. To me it seems exlusionary. And that means there are still peanuts or PB in the room potentially.
I guess my comfort level is very low. I feel like it is my job to keep my daughter away from anything that can cause a reaction for as long as I can, and that means keeping her out of a school with allergens in it, not merely at a table that doesn't have allergens on it. The school put me in contact with a PA parent of a child who is already there, and her attitude was very much like, "they need to know they're different and that they have to watch - the world is not peanut free so why would I put my kid in an artifical situation that is peanut free, when he needs to watch every minute anyway." I can see her point, but I disagree. I mean, I can teach my daughter to be careful even if her school, along with our house, is a safe zone. I don't think you need the presence of an active threat in your daily life in order to be taught to watch out for it. Thoughts?
I am still not sure how to deal with the current school, and my wife and I are still trying to decide whether we should pull our daughter out before she starts. Obviously this couldn't happen at a worse time of year, with school starting in about 2 months there aren't really any spots open at other schools. This leads me to a question for you all - since the headmistress of the current school has asked us to give her a list of things that would make us feel comfortable, and I'm probably not far enough into this to know what I really need to ask for, does anyone have any suggestions? If your non-peanut free school said they would do whatever you asked (short of making the entire school peanut free), what would you ask for? Is there anything you would want, but that you know deep down is unreasonable? Is there anything you could see the school finding unreasonable but you know, based on your experience, is imperative?
So sorry to ask so many questions, particularly in someone else's thread ... I just feel so fortunate to have stumbled upon this right as I am going through trying to figure out what to do about school, as well as digesting the fact that my daughter has this allergy. Knowing there are other people out there is a good thing.
Thanks,
Mike
I absolutely hate that statement (bolded in your quote). I just cannot understand how preventing a child's becoming sick or dying from a reaction trumps any level of inconvenience. I don't blame you for being uneasy about this preschool-I would be too. At that age I would insist on no peanuts (or nuts) at all in the classroom. Kids that age are notoriously messy when eating and do not wash their hands well by themselves. A child that age also has to rely 100% on others to keep her safe. You could tell her until you're blue in the face not to eat anything anyone gives her but she is too young to remember and/or understand. My kids have never been to any preschool or public school (or day care) so I have no personal experience but just the thought of this stresses me out.
As for the other PA parent, I can't imagine anyone thinking a preschooler needs to be prepared to deal with their allergy on their own. There is plenty of time to learn that when she is older and can understand better what to watch for. Even with older kids, they can't escape a dangerous allergen situation at school-they are forced to stay in a classroom that may not be safe. In the "real world" people can leave an unsafe place. I hate that "real world" argument.
sorry you are having to deal with this. :( I would start a new thread with your questions-you'll get a lot more replies, I'm sure.

Posted on: Sun, 06/22/2008 - 9:37pm
ctmartin's picture
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Joined: 07/30/2007 - 09:00

personally, i would opt for the peanut free school and save yourself the hassle of trying to convince this school that your daughter needs to be protected. a lot can happen between now and september ... put yourself on every waiting list and check out the one taht does not have a waiting list. you are very lucky to even have that option, as we do not.

Posted on: Mon, 06/23/2008 - 12:37am
SkyMom's picture
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Joined: 10/27/2001 - 09:00

gw_mom3, I agree whole heartedly. I would have no confidence in this school at all. Mike I would actively try and get your dd into a pn free school. My concern would be that this school would not practise the safety necessary for your child. At best they want to do the minimum? That comment spoke loudly to me. Good luck with whatever you choose. Sorry for the interruption of the topic.

Posted on: Mon, 06/23/2008 - 1:59am
Skywalker's picture
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Joined: 06/12/2008 - 16:10

Hi Mike,
Welcome. At age 2 1/2 to 3 is in my opinion way too young to have her attend a school with peanuts and tree nuts. There will be a time for her to learn to manage her allergies later. Not now. We went with a 100% peanut/tree nut free preschool for our son. The director of the preschool was great. She really enforced the peanut ban no matter what any other parent said. The preschool provided all of the snacks and lunchtime was optional (we opted out of course), but no child could eat peanutbutter or nuts for lunch.
If we didn't have a school like that, we would not have sent our child. I've come across several parents with various degrees of food allergies. Some are flat out reckless, others know the score and handle all situations very well.
Peanut bans only work if they are enforced. Think of it like speeding laws. People speed all the time, EXCEPT when they know there's a cop on the corner with a radar gun. It's worth it to be on a wait list for a school that will enforce a peanut ban. When she starts kindergarten she will be a little older and a little better prepared to deal with a peanut allowing school.

Posted on: Mon, 06/23/2008 - 2:05am
Faith3's picture
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Joined: 03/27/2008 - 08:48

I have an extremely "tight" or "high" comfort zone. Our house is nut free and I do not feel comfortable if a relatives house is not - and will not take the kids there. No "may contains" or "manufactured in the same facility". My kids have other allergens as well. My daughter is allergic to milk - class 1(which we do have in the house), but she does not eat anything that could even have a trace of milk.
Our allergist told us to keep the nuts out of the house (which includes a few relatives, j/k). He did not say to keep the milk out (or the other class ones - berries, melons, rice, etc. out). We do not allow seafood (except for tuna b/c they are not allergic - they still do not eat it - paranoia, lol).
I am terrified of nuts... we rarely go to restaurants (with the exception on Cici's and Papa John's who are nut free). We have an allergy aware McDonald's near us (they don't even hand out the packaged peanuts that are supposed to come with the sundaes), so we do go there.
I homeschool because I do not trust others to care for my kids the way I do. I was lucky when my son started kindergarten - he had an amazing teacher, and I tell you, I would let him go if she was always his teacher. His first grade teacher was the complete opposite - she handed out M&M's and had the kids sniff peanut butter for a science experiment!!! I never sent him back after that day and have been homeschooling since!
Before I go on and on, I'll just sum it up; if the place or food has nuts (or may contains) you won't see us around. If we go to a park, the kids shower as soon as they get home. My kids are still very active. The relatives they see are nut free so they have plenty of others they get to be around, our church is nut free (yay!), we go to parks, spend a lot of time with family, take classes at the Parks and Recreation center (we're lucky there - no food), etc. They are some of the happiest kids I've seen... they are kept very safe, but at the same time have a lot of fun... it does not take much to make a child happy. Love, attention, and security go a long way.
Enjoy your children and keep them safe... that's all that matters!!

Posted on: Mon, 06/23/2008 - 6:42am
nutty1's picture
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Joined: 02/24/2008 - 12:46

Mike, If you do decide to go with the school that is not peanut free, here are some questions you should ask. I would ask that your childs room be peanut free. That means no peanuts, no 'may contains, shared on the same equipment', etc. If they won't do that for you I would go elsewhere. That age group 2-3 has hands in their mouths all the time, it would be a contamination nightmare if PB were served! If they say 'ok, we'll do that for you, then ask more questions. The staff should be trained to read all food labels. Another thing that would be important to ask is that a note go home to every child in your childs class, stating 'we have a child with a peanut allergy', etc., asking that parents do not bring any nut containing foods for birthdays. Will your child be at the school all day? If there are snacks being given out, I would just bring your own safe snacks for your child, don't put reading labels as the responsibility of the school because in my experience they don't like to have that responsibility.
My child is 4 and we went through the same issues you are dealing with. He is in daycare all day 3 days a week. He is their first (hard to believe) peanut allergic child at their facility. I had to do a lot of educating to get the staff on board, I bring in his own snacks, and if I see peanut butter on the lunch menu- (school is not peanut free), then I bring him in his own lunch and he sits at his own table. It has worked out well so far, no reactions. The cook at his school is a bit of a moron which is unsettling to me. I remember having a long talk with her about my sons nut allergy, asking if she reads labels, on an on, and they she paused and gave me a blank stare and said, "so your saying he can't eat peanutbutter?" DUH!! I would suggest talking to the person who is preparing your childs food and see if they know anything about food allergies and the severity of them. We are actually in the process of transferring my son to a peanut free daycare. Although where he is has worked out ok, we decided to transfer him for the safety reason, as well as academically we found a place with a better curriculum.
If I were you, being new to this and being in a bit of a time crunch, I would opt for the peanut free facility. It will give you peace of mind and would be the easier route to go. I would also recommend "The Peanut Allergy Answer Book" by a Dr. Young, very informative for any parent with a PA child.

Posted on: Mon, 06/23/2008 - 6:59am
mpeters's picture
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Joined: 10/28/2001 - 09:00

Mike,
My daughter was the first child with PA in her preschool (8 years ago). It took a lot of discussion to get things right. One comment from the director was "but if I ban peanuts for her, what about all the kids with other allergies? Do I have to ban chocolate and milk..." I reminded the director that we were talking specifically about a life threatening allergy not an intolerance.
The next comment was "but the world is not peanut free why should we create that at school" My response was that the world is not weapons free either but we ban weapons in school because the teachers are responsible for the lives of the children while they are at school. We choose to ban weapons in order to make their job easier in protecting the children. I think that was when it hit home for her. In the end she made the entire preschool peanut free and it has remained so to this day.
I always request a completely peanut free classroom and eating area for my daughter. I also ask to be permitted to write an informative letter that is sent home with the classmates. I also require staff awareness level traing and specific education and training in the action plan and epi-pen use for her teacher and at least one other key person. I also make sure that a trained person will accompany her on any outings or field trips.

Posted on: Mon, 06/23/2008 - 11:25am
cristym's picture
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Joined: 11/19/2007 - 17:26

2 of my 3 children have Peanut Allergies. 1 is 8 years old and the other is almost 3 years old. (her twin sister has no known food allergies)
Our family and even our Allergist has different comfort zones for the 2. The 8 yo is not required to sit at a Peanut Free table, he is expected to wash his hands before and after he eats. He is old enough to read lables and mature enough to understand why he must turn down a cookie or cake if he can not read the lable himself, or I have not made it myself. My almost 3 yo will go to a peanut and tree nut free preschool.
When I started looking for a preschool for the girls, I called every preschool around to find out how they handle food allergies. We only have 1 around that is completely peanut and tree nut free. I have been accepted into their program, but have been told they most likely will not start in Sept, but will have to wait for an opening. I am willing (and lucky enought to have the option) to wait for the opening. I will be so much more comfortable knowing that all of the snacks and lunch are provided from the school, and that every morning they will show me what foods will be served for the day.

Posted on: Tue, 06/24/2008 - 11:33am
MtnDoo's picture
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Joined: 04/18/2008 - 07:42

Z2566...
I can only say that when my dd was diagnosed (a few months ago, at age 4), I was *freaking out* for a few weeks afterwards. Now is not a good time to figure out your true comfort zone, kwim? You *will* become more comfortable...even as soon as within a few more weeks.
My dd had already been in her preschool for 2 years, had already been doing playdates, ballet, birthday parties, traveling (and we found out about her allergy while on vacation...so dealt with family, flying, restaurants, not being in our own home, etc... all at once). So my comfort zone is somewhat larger (though I carry epis everywhere, made our home peanut free, ask about foods, bring our own if necessary, etc...). I'd say my dd is leading a pretty normal life-I'm not sure it's changed much, frankly.
My dd's preschool (again, we had been dealing with them for 3 years already b/c of my ds and dd...) is not peanut free. There are no peanut free schools in our area. This is actually the first year that they have *had* a kid with a peanut allergy! And it wasn't my dd-there's a few other kids already diagnosed with it. Their policy is that snack cannot contain peanut products (and each parent takes turns bringing a homemade or storebought snack in it every 6 weeks or so). Even though snack is "peanut free", my dd typically has her own snack. If snack is yogurt containers & graham crackers, she's allowed to have it (after I read the label!). If it's homemade muffins or cookies, she has whatever we brought for her. But this way, every kid isn't being served (and consequently smearing all over) peanut products...
For lunch, kids *can* bring pb&j. However, our school is smallish-the kids are in groups of 6 kids, and eat lunch with their group. The teacher will seat the kid with pb&j away from dd, and ensure that they will wash their hands after lunch.
I also keep dd's epi-s and some benadryl at school, with instructions on when to use it.
This situation works for me, so far. Again, my dd has been exposed to peanuts about a bazillion times before her first real reaction (my guess is the peanuts she ate hurt her mouth or tasted "spicy" or whatever before... she just said she hated them). Although all peanut allergies are serious, my dd is sort of on the "less serious" side, if that makes sense. Her RASTS are low, her skin test was sort of mid-range positive, and she's not airborne or contact reactive. Her allergist said she does not need to be placed in a nut free classroom. And, I am already familiar with the school, teachers, etc...& already have a rapport with them, so I am comfortable with our situation.
What was helpful for me...was the director of our school told us to really drill it into dd's head that she is not to eat anything that we did not give her. She is not to eat or touch anyone else's snack or lunch. She really does need to develop an awareness of her allergy (and she does...I know she knew peanuts were not for her 2+ years ago...she naturally avoided them). At the end of the day, despite all of our best efforts, it is going to be *her* that chooses whether or not to eat something when it's available, behind our backs. Your dd is much younger, and she does need some assistance with people providing a safer environment for her. She's a little young to be completely thrown to the wolves, but she's not too young to know that peanuts = unsafe and bad for her. It is amazing what the kids know...dd has a 3 yo in her class that cannot eat tree nuts, peanuts, wheat, egg, dairy...and needs his own sunscreen, etc... That kid *knows* what the rules are & that he will get sick if they are not followed. It's really fascinating.
Really, I think my school is pretty reasonable. They did ban peanuts for snack (so every kid is not eating and smearing them). They did not ban peanuts for lunch (to do so would basically make the school pn free...). They do take pretty reasonable precautions, if a kid does eat pb for lunch-dd is seated at the other end of the table, kid washes their hands, etc... I'd also want to make sure that *other* kids who eat pb for lunch are washing their hands/mouths, even if dd is not in their group. I will ask about that next year. That's my only "new" request...
Another thing I"d want to do, is get the epi pen trainer to better show the teachers how to use it. I did go over the directions, but the trainer is better. Ask your allergist for one.
They do have a big sign in the kitchen (where the kids also eat) with all the kids who have allergies...what their allergies are, etc... Every kid has their own gallon sized ziploc with their epi pens & medicines in it, and instructions taped to the outside.
If I were in your shoes, I'd put my dd on the wait lists for the pn free schools, and then work with the existing school to make it safe enough for your dd. I personally would not forgo preschool, just b/c of peanuts. This comes up on another board I am on, all the time "should I send my kid to the *good* preschool or the *pn free one*?"
ETA: Now I see the previous posts, and apparently everyone feels somewhat differently than me! But my situation was different... I wasn't going to put the brakes on everything dd was already doing (i.e. pull her from preschool, which she loves, and homeschool her-which neither of us are cut out for), b/c of the allergy...

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