Differing Comfort Zones ... How do you feel?

Posted on: Mon, 06/16/2008 - 4:19am
ctmartin's picture
Joined: 07/30/2007 - 09:00

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
Joined: 05/28/2009 - 16:42

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
Joined: 02/05/2007 - 09:00

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
MtnDoo's picture
Joined: 04/18/2008 - 07:42

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
PeanutFreeInMD's picture
Joined: 04/23/2007 - 09:00

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
Joined: 10/15/2007 - 08:30

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
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
KSLaru's picture
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
ctmartin's picture
Joined: 07/30/2007 - 09:00

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
Joined: 01/16/2007 - 09:00

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
cfkjc2's picture
Joined: 07/13/2007 - 09:00

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.


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