overwhelmed & unsure about gray areas

Posted on: Thu, 01/18/2007 - 11:48am
cam's picture
cam
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Since finding out about my son's peanut allergy in late September (he's 3, PA level 5, RAST of 57, probably has asthma, slightly positive to two tree nuts, so we avoid all), our lives have been completely focused on figuring out how to manage this. There are so many gray areas and have been so many judgment calls, and each time I've felt like we've begun to get a handle on managing it, the wind has been knocked out of our sails. I just wanted to post about a few of those judgment calls we're trying to make and would really appreciate any feedback:

-We saw a second allergist yesterday who told us that my son is clearly a "no-nut guy," and that this includes sunflower seeds, sesame seeds, and coconut. Have any of you gotten similar advice regarding these, especially coconut? My son hasn't been tested for any of these 3 things, so I'm assuming his advice is because he thinks my son has a high potential of becoming allergic to them?

-We've never noted any type of contact reaction until tonight. My son had his shirt off when my husband got home from work. Soon after, we noticed my son's trunk was blotchy and he had a raised hive on his shoulder--where my husband had just touched him. My husband then realized that there was a party this afternoon at work, and he picked up a bar and then set it right back down after realizing it had peanuts in it. This was probably 2 hours before he touched my son, and my husband did not eat the bar and had quickly set it down. We're assuming it was a contact reaction, though. Given this, am I taking too big a risk by taking my son (and our baby as well) to places like the mall, indoor parks, music class where younger kids could have mouthed an instrument?

-My son and I take an early childhood class together, and have worked things out with his teachers. I would like to also be able to take a class with my baby, but I feel like I can't because my 3-year-old PA son would need to be in the sibling care room. This is a room where parents drop off kids with a snack from home (typically cracker-type stuff). They say the room is peanut free, but I know that it is not because a) there has been minimal effort to inform parents of this, b) parents of non-PA kids are likely not reading for may contains and calling manufacturers, and c) I've been in the room when teachers accepted baked goods from parents at holiday time. Part of me thinks it would probably be okay for my son to be in there because he does not mouth things or eat others' food, and I wouldn't have him eat there since it's just an hour or so. It still feels risky, though. Am I being paranoid by not enrolling in classes that would require my son to be in that room? Any ideas on how it could be improved?

I will stop; I know this is too long. I feel very overwhelmed right now. We have an 8 month old who sleeps for 3 hours at a time at night. On the bright side, my son really understands and is doing well with it. Any advice would be much, much appreciated.

[This message has been edited by cam (edited January 18, 2007).]

[This message has been edited by cam (edited January 19, 2007).]

[This message has been edited by cam (edited September 03, 2007).]

Posted on: Thu, 01/18/2007 - 12:59pm
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I'm not going to be much help, as my daughter is now almost 20, but she hs been allergic to a couple of tree nuts for about 11 years. Just a year ago she began reacting to peanuts, and then tested positive to peanuts and now all other tree nuts. Since that round of tests, she is reacting to coconut as well.
The nuts make her throat itch, hives, blotches, make her shaky. So far, the coconut gives her respitory symptoms - she calls it her 'ranch dip cold'. There is a brand of ranch dip that contains coconut oil, and she reacts to it every time, as well as in the nut-free granola bars, and things like hot chocolate mix.
She is still at home, so I can control what is in the house, but she is often out with her friends or at work, and it does make me nervous - even though she is well aware of what to watch for.
Today we were talking about her allergies, and she thinks that if her (future)kids had food allergies she can't imagine sending them to school - how scary that would be...
I was pretty naive (about nut allergies) at the time she was diagnosed TNA, and she's only had one major reaction - last spring, that required only Benadryl and observation, so I've been lucky. (we have had epi since she was 8).
I can't begin to imagine how vigilant so many of you have to be - all the time.

Posted on: Thu, 01/18/2007 - 1:04pm
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Dealing with PA can be absolutely overwhelming, especially in the beginning when you are overloaded with information.
Quote:-We saw a second allergist yesterday who told us that my son is clearly a "no-nut guy," and that this includes sunflower seeds, sesame seeds, and coconut. Have any of you gotten similar advice regarding these, especially coconut? My son hasn't been tested for any of these 3 things, so I'm assuming his advice is because he thinks my son has a high potential of becoming allergic to them?
I think that's a safe assumption. I know when my son was first tested at age two, we were told to avoid all legumes, even though he wasn't tested for each individual one, same with tree nuts - at this young of an age, better to just avoid, especially since they aren't really anything too hard to avoid, KWIM? Then when he is a bit older and you may want to try more things, get him retested for specific things.
Quote:-am I taking too big a risk by taking my son (and our baby as well) to places like the mall, indoor parks, music class where younger kids could have mouthed an instrument?
My son recently had a contact reaction very similar to your son's. Someone who had likely eaten pb (much) earlier touched his arm and he broke out. But ds is seven, and I have never restricted taking him places. We've done kiddie gym classes, malls, amusement parks, etc. I don't think you should think of it as taking risks, these are just "normal" places. Even now, we go places and I am always on the lookout for people eating nuts. It will always be there, just learn to be really vigilant about spotting contraband and avoiding it when you are out. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
Quote:A relative sliced a loaf of bread from a local bakery (after I told her my son can't eat bakery items), and set the plate on the table right in front of my son. We didn't let him eat any, but in retrospect should I have told her it shouldn't be on the table so close to where my son was eating?
If it was just plain bakery bread (I would consider that a "may contain") I wouldn't worry about it being near your son, unless you were worried he might grab a piece and eat it. If it was something more suspect - well, don't be shy to move things away, you'll be doing that a lot in the future [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
Quote:I would like to also be able to take a class with my baby, but I feel like I can't because my 3-year-old PA son would need to be in the sibling care room. This is a room where parents drop off kids with a snack from home (typically cracker-type stuff). They say the room is peanut free, but I know that it is not because a) there has been minimal effort to inform parents of this, b) parents of non-PA kids are likely not reading for may contains and calling manufacturers, and c) I've been in the room when teachers accepted baked goods from parents at holiday time. Part of me thinks it would probably be okay for my son to be in there because he does not mouth things or eat others' food, and I wouldn't have him eat there since it's just an hour or so. It still feels risky, though. Am I being paranoid by not enrolling in classes that would require my son to be in that room? Any ideas on how it could be improved?
I was like you, my older child is PA, and I had a second one when he was two - honestly, I only did activities where I could have both kids with me. They are out there. We did lots of stuff at the library. I never got to do a baby and me type class with my younger one, but honestly, he didn't suffer for it [img]http://uumor.pair.com/nutalle2/peanutallergy/biggrin.gif[/img] Just MO, but I wouldn't have been comfortable putting my PA son in one of those group care rooms when he was younger.
[This message has been edited by mcmom (edited January 18, 2007).]
[This message has been edited by mcmom (edited January 18, 2007).]

Posted on: Thu, 01/18/2007 - 9:45pm
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Thank you - your replies are very helpful to me. That's really interesting about your daughter reacting to ranch dip with coconut oil in it. My son has had two instances of hives due to reasons we could not pinpoint. One of those was after eating Ranch dressing, and the allergist said there are so many things in it that it would be hard to know what to test for, but just to avoid. Your message got me wondering if there was coconut oil in it. I found the ingredient list online, and didn't see that, but there is canola oil. I met someone whose PA child reacts to canola... This is making me realize I need to watch for reactions to these ingredients.
That's helpful about the bakery bread on the table, too. It was just plain bakery bread (no visible nuts), and so a "may contain." Maybe we can recognize the spectrum in a situation like that--my husband and I certainly wouldn't let him eat it, but maybe it was okay it was on the table, but if it were any kind of nut bread we should probably ask that it not even be on the table right next to him...
These replies are so helpful to me. I don't think well on the spot sometimes and really need to think through just what our comfort level is and how to handle these different situations that arise. I really appreciate the feedback about navigating public places and about the drop off room, too.
[This message has been edited by cam (edited January 19, 2007).]

Posted on: Fri, 01/19/2007 - 12:56am
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Anonymous (not verified)

Quote:Originally posted by cam:
[b]-We saw a second allergist yesterday who told us that my son is clearly a "no-nut guy," and that this includes sunflower seeds, sesame seeds, and coconut. Have any of you gotten similar advice regarding these, especially coconut?[/b]
I am allergic to peanuts and sesame seeds. I avoid all nuts, although I don't know if I would react to them or not.
I recently saw an article that says a lot of people with pa do develop an allergy to other seeds, especially to sesame seeds. If I can find it, I post a link. Maybe it's true of sunflower seeds too, I don't know. I know that I do eat sunflower seeds with no problem.
As for coconut, for some reason that seems to get lumped in with nuts, although it isn't a nut. I eat fresh coconut and I bake with flaked coconut -- although I have to be careful which brand I buy as some have trace amounts of peanut.
This is [i]my own[/i] experiences, and I apologize if it is more confusion than help.
Oh, also, canola is one of my *oils of choice*. Vegetable oil [i]can[/i] include any kind of vegetable. In Canada, if peanut is one of the oils used it must be on the label. However, I still feel safer with canola oil.

Posted on: Fri, 01/19/2007 - 1:08am
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I will let you know how we handle things...I have 2 PA/TNA and SFA boys (4 and 6 yrs) and I think we have a pretty tight comfort zone. The oldest had 2 hives once (contact or ingestion or residue) and 2 mystery reactions recently that were mild, and that's it since official diagnosis 4 years ago.
1) We only avoid pnuts and treenuts although I am cautious about seeds and legumes, we try not to overdo it and I actually insist that the boys eat a spoonful of peas when we have them (1-2x a month) to try and avoid developing the allergy since they've never reacted.
2) If the boys are with me, we rarely avoid going anywhere...we've frequented the chidren's museum, grocery store, gymnastics classes all without incident. We carry wipes and wash up afterwards. We emphasize no hands in the mouth. I keep my eyes open. We did have one situation where I refused to put he boys in gymnastics simultaneously because they would be in separate rooms and I couldn't watch both at once. Then a mom showed up with 5 kids all eating nutter butters in the observation room and I just about had a nervous breakdown watching my 1 and 3 year olds AND keeping an eye on the 5 year old in class so I asked my MIL to come over and watch the younger ones at the house for the rest of the term.
3) Family will likely always be an issue. Try to be kind but clear. Prioritize your son over relationships and teach your son only to eat food you give him.
4)I've put my kids in 'childcare' where there was only goldfish and water and I was nearby but I wouldn't do it again. My policy now is that if my kids are away from me or dh it had better be a pnut/tnut free environment with someone fully trained to recognize symptoms and administer the epi. I have let ds now go on a playdate 3 houses down with my friend who I trust and trained. They know not to eat pnut stuff while he's there, I'm close and he has his epi, but he's also 6 and mature enough to communicate symtpoms and express unease if he sees something that might put him at risk.
luvmyboys

Posted on: Fri, 01/19/2007 - 2:31am
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Cam,
Your post was not too long, and it is normal to feel overwhelmed. I know I did when we started to have to "deal with" the implications of dd's PA. In response to your particular questions:
- there is discussion/disagreement on certain types of named "nuts" like coconut, shea nut, sweet almond. I use coconut without a problem. You can find good advice and info via this site on these types of pseudo-nuts.
- We take our dd everywhere, but watch her like a hawk if there are other kids around. Yes, it is stressfull for the parents, but I think it is better than the alternative of having her grow up in a bubble. We try very hard not to let her see us stress. I have been known to ask some older kids running around the local pool with Snickers bars in their hands to go run in another area because of dd's allergy. They just smiled and said "ok." As for instruments in class, I think I would not be comfortable with that. If he is truly interested in music, I think I'd either pick something that did not involve a mouth (piano/drum/violin), or buy his own instrument. I think you have a few years to figure this one out.
- Relatives - your son's life is yours to protect. If you have to step on someone's toes, so be it. That said, we don't allow anyone else's food in our house with the exception of my mom's (she totally "gets it" and my BIL's BBQ - it is fantastic and nut safe). That is a hard and fast rule. When we are out of the house, dd eats only what we bring her. I don't even try to figure out if everything everyone else made is safe. I do ask that no one bring frank PN containing products. If one was there, and it was not removed at my asking, then we would just say sorry and leave. I do NOT worry about possible "may contains" etc that do not have frank nuts like the bakery bread, because I know she is not going to be eating it, and the liklihood of touching the one crumb that MAY be cross contaminated is just so unlikely. At that point I might as well worry about her being struck by lightening, in my mind. So I would not have worried about the bread at the table.
- Certain things my dd will never be able to do because of her PA. So be it. Life is not fair. She NEVER goes into a drop in day care/nursery type situation. I consider that too risky. You have no control over what other parents fed their kids prior to coming, what food is still smeared on their hands and clothes, and how the nursery workers will respond to either your concerns or the child's PN exposure.
What has worked for us is to have hard and fast rules - no food from anyone but us, don't trust anyone else to know what is safe for herm take the epi pens everywhere. We treat this with the same matter of fact-ness as "don't play in the street, don't put your finger in the light socket." I don't bemoan the fact she can't eat someone's birthday cake, because I don't want her to consider her PA such a downer (she will soon enough as she gets older, no need to set other emotions on that first.)
So, it's ok to be overwhelmed. It IS overwhelming trying to keep our children safe from something that is everywhere, and that for most people is not dangerous and so not on the forefront of their minds. You will find your comfort zone, and then learn to modify it as your son grows. You've found a great group here. Please don't hesitate to ask lots of questions or just vent.
------------------
Lori Jo,
Rose, 7-31-02, PA
Beatrice & Georgia, 8-14-99

Posted on: Fri, 01/19/2007 - 3:23am
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We try and take my pa ds to many places, but I avoid like the grocery store if I can and places where I know peanuts will be out.
As far as someone touching him and giving him a reaction, you could always make sure he has a long sleve shirt on and long pants.
I forgot to check where you are from, but it may help if he is mostly covered up. This time of year, in Minnesota, it is very cold so I just have my son wear his gloves if we go to Target or one of those places.
Wipes, stock up. I take them everywhere. I tell him to try not to touch the shopping cart, food, tables, etc. He wipes his hands as soon as we leave the store and then he washes his hands as soon as we get home. When he was really young, if it was a short trip, I used to have him sit on his hands because he had a habit of putting them in his mouth.
I would say it is best to avoid all the things the allergist suggested until he can be tested.
Anyone that comes into my house has to wash their hands before touching anything, including my dh or I. That is the first thing we always do, it has just become habit now.
As for relatives, it took a long time before they really got it. Although this year for Thanksgiving and Christmas it went really well. We went to one of my brother's house for Thanksgiving and another brother's house for Christmas. They both called or e-mailed me with what they were having and any questions about the ingredients. My sister-in-law e-mailed me a list of every single ingredient they were going to use to make sure they were all ok, brands included. I thought this was fantastic. My ds did fine at both places. So, it can be done. All you have to do is say "Please call me with any questions you might have about the ingredients you are going to use or brands, I will be glad to help." That is all it took for me to say. Also, just keep talking about it when you are talking to them, kind of in passing, but being specific to keep it in their minds about his allergy because they do forget. It is always on our minds every second of the day, but not every one elses.
Good luck and it does get better.
Jan

Posted on: Fri, 01/19/2007 - 3:45am
Corvallis Mom's picture
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It sounds like your son is pretty young-- preschool aged?
At this age, he won't suffer at all if you need to live in a "bubble" for your own sanity... at least for a while. His world still revolves around you so much that as long as YOU are on an even keel (and not teribbly stressed all the time) HE will be okay too.
It takes time to figure out what works. Don't [i]obligate[/i] yourself to a regular event, mentally. Think instead, "Well, it [i]sounds[/i] okay. We'll try it and see." But give yourself permission to retreat if it feels scary. NOT if [b]other people[/b] agree that it is scary. Once you give yourself that permission, much of your stress will melt away. You just need time to figure out what [i]your[/i] rules need to be.
I have been doing this for about seven years-- and while it doesn't get "easier" over time, you do get used to your new lifestyle and let go of the expectations that you think other people have of you. I no longer feel that I need to apologize or explain things that seem weird or restrictive to other people. It just [b]is[/b] in this new world. KWIM?
I would also spend some energy emphasizing to your child that hands DO NOT BELONG anywhere NEAR his mouth, nose, or eyes. This is one habit he will be sooooo happy you've given him. And a nice bonus is that you'll ALL get sick a whole lot less often. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
ETA: One other helpful tip is to train our PA/FA kids to be self-reliant and quiet... I started doing this when DD was about 2.5 yo-- because it was becoming quite plain that anywhere DH and I went, [i]so would she.[/i] Once she learned to read, this was much easier, obviously, but before that she had a Leap Pad and headphones, she had crayons and coloring books (or better yet, a spiral sketchbook!!) that she would use all by herself while adult conversation/activities flowed around her. She has sat through meetings with me which have been as long as 2 hours. And often the other aduts in the room forget she is there. We've worked HARD on this skill-- she knows that good behavior is amply rewarded. She also has learned about delayed gratification in the process!! But we did it because her basic safety requires her being welcome wherever we [i]need[/i] to be. When she was little, she understood that the signal for this kind of behavioral expectation was being dressed a certain way (not in 'play clothes') and being given her activity bag, which she didn't otherwise have access to. No,it isn't "normal." It isn't a "fair" expectation-- but it is our reality.
[This message has been edited by Corvallis Mom (edited January 19, 2007).]
[This message has been edited by Corvallis Mom (edited January 19, 2007).]

Posted on: Fri, 01/19/2007 - 5:16am
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I feel so fortunate to have this group. This is immensely helpful in figuring out what our comfort zone is. As I read your responses, it is clear to me that the drop-off child care situation is a definite "no" b/c even if I educate the staff, there are too many things that can't be controlled. Teaching my son simple rules sounds very good; and we'll be able to tell friends/relatives that we have these basic rules and need to be consistent with them in all situations. It's very helpful to hear about how the situations with relatives are handled, too. I am--or should say was--the world's biggest people pleaser, and it's been very anxiety-provoking to have people act like we're overreacting, etc. I'm seeing that this is the thing that will just force my husband and me to kiss people-pleasing goodbye because we have to--not that we can't try to be pleasant and compassionate about it, but that we need to know we have basic rules of survival and that we don't need to apologize for them. It helps to get your reinforcement and ideas for specific things that can be said. I guess I still don't know what to think about coconut, etc., but as one of you said, maybe we will just do exactly what the allergist said for now until my son is tested again since it's all so new and anxiety-provoking.
I just got back from a situation with my 8-month-old (who has yet to be tested, but we're obviously on the lookout for allergy signs and being careful about what we give him). We were at a play thing where there were shared toys and I brought separate toys for my baby since he's in the stage where everything goes in his mouth (one of my reasons was I don't want him getting another cold, and the other is I feel so nervous about this peanut thing and not knowing if other kids had mouthed these shared toys--a bunch of kids were there). Another mom acted like I was being so mean not to let my baby play with the shared toys (he's 8 months and was oblivious) and like I was a freak. I started second-guessing whether I was being too paranoid and let him play with some, which went directly to his mouth. Now I'm beating myself up for being so insecure and letting myself be swayed. I think I'm seeing with this PA that I need to give myself permission to define our own comfort zone, and remove the stress of worrying about whether we're perceived as rational by others. This is definitely going to make me a stronger person...that much I know.

Posted on: Fri, 01/19/2007 - 10:30am
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Hello Cam,
Yes, any allergy is overwhelming and really does seem to take over your lives for awhile. It is hard to believe but true, that one day dealing with these allergies will be just the way your family is and how your family lives and it becomes much less overwhelming.
My DD is allergic to peanuts, tree nuts, coconut and egg. It is possible that the doctor saw something in the test results for your child that indicate allergies to something like coconut.
My DD has many contact reactions that usually clear up with one dose of benedryl and some cortaid. Coconut is one that is tough to avoid. If her friend is wearing sunscreen - contact! If her friend has washed her hands with soap (usually contains coconut) - contact! She is very reactive and often comes into contact with things at school, on the bus, etc.... She is cautious. She washes her hands often. She speaks up quickly if something itches. Everyone in our family walks in the door at home and immediately washes their hands. Sometimes clothes are changed in the basement and left at the washing machine if someone participated in an "unsafe" event. These things are just the way we are. I don't have to police this as much anymore.
Family, friends, teachers, etc... some will get it and many will not. Some will not want to get it. Understand from their point of view, it is not part of their life and therefore is not their priority. They are not in the trenches, you are.
The best you can do is educate yourself and your husband, raise a brilliant wise child who is not ruled by allergies, advocate for your child and chose to participate in any and all activities that you determine are safe or that your child can participate in safely after you make some accomodations. Do not make excuses for those you do not attend - know you have made a wise decision.

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