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Posted on: Mon, 09/11/2006 - 9:06am
LisaM's picture
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Quote:Originally posted by Corvallis Mom:
she failed to follow the rule about not taking them off.
Oh, I see now---a sin of comission rather than of omission. It sounds like for some reason she is finding it awkward or uncomfortable sometimes to wear her epis since she takes them off from time to time . . .

Posted on: Mon, 09/11/2006 - 9:23am
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I didn't get to read the whole thread - only the first two posts, so forgive any repetition.
I think the fact that she made it this far without losing it is pretty miraculous! I know she is a highly unusual kid, but she [i]is[/i] still only 7. I don't think putting it down and forgetting it is so unusual for that age. Heck, it may be even more common at my age! [img]http://uumor.pair.com/nutalle2/peanutallergy/biggrin.gif[/img]
My son has (twice!) left it overnight in the car - once in ridiculously hot conditions, the other time in below freezing temps. I was livid - that cost me $50 each time to replace them. To add insult to injury the second time it happened they were only a week old.
Now for the tricky part. I was hard-pressed to come up with an appropriate punishment, because I don't want him to afraid to let me know if it happens again. I'd rather shell out the $50 than have him walk around with ruined epipens, KWIM? It's a tightrope, to be sure.
Did anyone turn them in to the lost & found?
Amy

Posted on: Mon, 09/11/2006 - 10:06am
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Hmmmm. We're not remotely in a position for ds to carry his own epipens. I wish we were though, because I think it's an important habit to get into when the time is right. He's still at the point where he likes to pretend he can eat peanuts [img]http://uumor.pair.com/nutalle2/peanutallergy/rolleyes.gif[/img] Don't get me started!
Well, from reading Corvallis Mom's posts, it sounds like she's been wearing the epis for a LONG time now, and has done well with this. Since that's the case, I think it's pretty safe to say that Corvallis Mom knows she's capable of carrying her own epipens.
I can't think of a parent who would strap them onto a child who's screaming bloody murder they don't want them or showing obvious signs of stress over wearing them.
I have no idea what I'd do in this situation, since like I said, we've ummmmm got a ways to go maturity and understanding wise.
My only question is this: Could it be possible that social pressures/desires to fit in are becoming more important and distracting her? Or even making her wish she didn't need the epis so she puts them down more?
Based on some of your descriptions of reactions Corvallis Mom, I completely understand how you want her to KNOW the necessity of the epi.
Best of luck on the latest roller coaster ride of allergy management! Meg

Posted on: Mon, 09/11/2006 - 10:32am
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Quote:Originally posted by Corvallis Mom:
[b]This isn't about "punishment" so much as it is about correcting a problem.[/b]
If I may be so bold as to say, it doesn't actually sound like a "punishment" to me. Not in the traditional sense. It sounds more like "logical consequences".
[i]You forgot your epi-pens. Therefore, the logical consequence is that you must stay where I can see you until I know you will remember them.[/i]
It doesn't sound (to me) like you are saying she can't do [i]something[/i]. You are just saying where she can do it.

Posted on: Mon, 09/11/2006 - 10:32am
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Thanks, mattsmommy and Going Nuts...
As LisaM pointed out, I immediately suspected the bag (which is relatively new) but she vehemently denies that it was uncomfortable in any way...
[img]http://uumor.pair.com/nutalle2/peanutallergy/confused.gif[/img] So I think it is probably just that she is distracted and in the course of fidgeting (or whatever you call it when 7 yo)... she takes them off-- then she gets distracted and totally spaces on putting them back on. She knows that she can ALWAYS choose any carrier she chooses. It has always been her choice. And we will ALWAYS carry them for her if she asks. Always-- but she knows that comes with a 50 yd leash tying her to them.
This is why we want her to [i]really[/i] reform her ways about taking them off to begin with. If we can just get her into the habit of following a "rule" about that, all should be well again. This is because she so rarely makes this mistake in restaurants or in leaving the house-- there's a rule.
FWIW, we [i]all[/i] feel that we got off relatively easy. Including the driving, the gas, and DD's monthlong retraining regimen. (Since some people objected to "punishment" if I didn't get any either...)
And I think it is worth noting that I have let other incidents go without any punishment-- this was a judgement call. I have in the past cases also been torn between "reassuring" and "letting her stew." But there is a reason that I used to term "unrepentent" in my original post. And I stand by it. If she had freaked out and been suitably remorseful, that would have been a different situation, but she didn't. And yet I definitely don't sense rebellion at the root of it. If I did, we wouldn't be handling it this way. It was an honest mistake-- made by someone who was being a bit careless and distracted. She can be that way about anything else... forget your shoes, forget your coat, forget your pants, even, but not that. KWIM?
ETA: Yes, Annamarie, this is exactly what we decided and why. DH initially wanted her to share the costs of replacing the bag and its contents, and later I talked him out of making her pay for half the gasoline expense... (which I thought was too harsh, even as mad as I was). We discussed this at some length last night in the car while DD was sleeping on the way home.
On a lighter note, a whiny DH is now claiming that his severely sunburnt feet might really be [i]my fault[/i] as well. [img]http://uumor.pair.com/nutalle2/peanutallergy/rolleyes.gif[/img] After all, I didn't remind him to use sunscreen.... (sigh)
[This message has been edited by Corvallis Mom (edited September 11, 2006).]

Posted on: Mon, 09/11/2006 - 11:51am
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On another note, you mentioned your daughter had been in a beach bathroom.
Here in CA and other places there is an alarming increase in the number of child molestations occuring in park, lake and beach bathrooms. They are open to everyone and dangerous places for bad people to lurk.
A number of children have been assaulted while their mothers stood outside of the bathrooms waiting for their child to come out.
Just information.
peg

Posted on: Mon, 09/11/2006 - 11:59am
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I have been thoughtfully thinking about your situation all day today...
I agree with the post that stated that "no matter what, at this point, don't change the consequences of her actions." Stick by your parenting choice. No one knows better than you.
BUT, having said that, I have just read the whole thread, and you keep commenting about her doing things like this a lot in the last few weeks, and then 18 montha ago...nearly every post mentions how she has been forgetful with the Epi's.
I am new here and don't know a lot about you and your daughter (ie her rxns)...but I did catch that she is gifted.
Have you considered sitting down with her in a 'family meeting' and asking her point blank. "We would like you think about this and get back to us tommorrow morning...Do you think you are ready and willing to carry your epipens? Or is there a concern or issue you have with doing so?"
I would imagine there could be emotional damage done to a child that might feel insecure about her ability to play a substantial role in the saving of her own life? KWIM?
I come to you with this b/c I was a gifted child. I had a very controlling mother who kept me quite close to the apron strings. I was terrified of her, and thus NEVER wanted to disappoint her. I did everything she asked me to. TO her, I seemed very mature. Yet in reality, I was socially VERY niave. I would even say immature for my age. Unfortunately my mother didn't find the 'balance' to allow me to excel in a gifted program (she just didn't know any better). Kinda shocking to get to late high school and start blowing away tests and find out jsut how stinkin' high my IQ was. My point is, there is a balance. I used to think about things like my purpose on the universe and the meaning of life at the age of 6! But I had such a controlling mother I never got to make any decisions.
Maybe your daughter feels out of control too (lord knows PA can do that)...and maybe by having a heart to heart with her you can give her a little control.
I understand you want her to be responsible...and as a parent.. you won't find another mom more on the 'responsibility' bandwagon...but maybe the responsibility can wait. Tell her you can revisit her medical action plan every 3 months, with the expectation that if she doesn't want to carry the epi now, she can again in 3 or 6 months, or a year. And also with teh understanding that if she doesn't carry it, she can't go roaming the neighbhorhood without you in tow! [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img]
Good luck...sorry for such a long post!
Edited to add...I think you think you are giving her control and responsibility by making her carry the epis. In fact she might not be ready, and the control she needs is to be able to say, "Not yet".
[This message has been edited by 3xy1PAinNH (edited September 11, 2006).]

Posted on: Mon, 09/11/2006 - 1:14pm
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OMG!!!! [img]http://uumor.pair.com/nutalle2/peanutallergy/eek.gif[/img] Peg-- I just realized that you must have thought I let her go alone. OMG NOOOOOOO. Trust me-- I am nowhere near that naive-- and I won't say why, but [i]I know better.[/i]
So no, she was with me (and our dog, who had followed us in.) It had been so windy that I knelt down and was gently removing the sand from our dog's nose and eyes with a damp paper towel while DD washed her hands. This is why I didn't notice that she didn't have them on-- when we walked out the door, she was walking slightly behind me and the dog (who was off-leash, so I needed to keep up with her in the parking lot). DD was never actually out of my sight, but I was not looking [i]at[/i] her, if that makes sense.
(NO wonder you thought I was negligent.) Holy cow.
And my thanks also for the perspective about my daughter perhaps being a bit intimidated to say anything to us. Knowing her, I strongly doubt it-- but a household full of type A people, you never know, right? Communication isn't a problem for her... LOL!! She certainly tells me [i]exactly[/i] what she thinks. Come to think of it, she only holds back with people she doesn't know and trust.
I would also anticipate that if she were uncomfortable with the idea of carrying them, she would hand them off to one of us all the time. And she definitely doesn't-- not even if we ask if she would like to. She knows that just carrying them doesn't mean we expect her to know how to use them. We've absolutely covered that-- she knows that eventually, yes, that will belong to her as well, but not now. Not until SHE is ready. We actually took that sort of approach to her carrying them in the first place, as bizarre as that sounds. She WANTED to.
What worries me most about this pattern (and her response yesterday) is that I suspect that the memory of her last anaphylactic reaction is finally beginning to fade. I talked to her about that yesterday and was deeply distressed to realize that she doesn't recall it well enough now for it to feel frightening. (She was 2, and for years, this was very clear in her mind... at least the parts where her BP was high enough to be powering her brain sufficiently.) So I am wondering if we are now battling [i]that[/i]... It never even dawned on me that she might eventually forget even a near-death experience. It was so clear for so long that I truly just assumed she would always recall it. Much of her handling of her allergy has hinged on it.
That makes me more afraid than I can put into words.

Posted on: Mon, 09/11/2006 - 1:34pm
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[b]So I think it is probably just that she is distracted and in the course of fidgeting (or whatever you call it when 7 yo)... she takes them off-- then she gets distracted and totally spaces on putting them back on. She knows that she can ALWAYS choose any carrier she chooses. It has always been her choice. And we will ALWAYS carry them for her if she asks. Always-- but she knows that comes with a 50 yd leash tying her to them.[/b]
Right. She is 7. Maybe the problem I am having is that I don't equate my son's intelligence, with his readiness to carry his Epi-pens. I make that judgement for him, because he is only 7. And that, right now, regardless of his PA/TNA, he will have that '50 yard leash' tied to him -- because he is 7. Right now, I feel both my children are too young to be anywhere without DH or I, or a combo of the two -- and when he is at school there are adults that are responsible for him (with his medication in class with him).
I'm trying to find the right analogy to get across what I mean. All I can think of is that when I was in my teens I was allowed to do a lot of things because I was smart and responsible -- or so my parents thought. Now, looking back, there were many things they should have said 'No' to because I was only a teenager -- regardless of my maturity.
[b]This is why we want her to really reform her ways about taking them off to begin with. If we can just get her into the habit of following a "rule" about that, all should be well again. This is because she so rarely makes this mistake in restaurants or in leaving the house-- there's a rule.[/b]
Again, for me, punishment for something that you are establishing as a habit, and viewed as a mistake if she forgets, doesn't seem fair to me. She is 7 -- making a mistake, as opposed to willful disobedience, are two different things to me. You trying to instill good habits in her is a good thing - but if she doesn't get punished for forgetting other things, and what she gets is a reminder, well, to me I think that the response to forgetting Epi-pens should be along the same lines -- because she is 7.
[b]On another note, you mentioned your daughter had been in a beach bathroom.
Here in CA and other places there is an alarming increase in the number of child molestations occuring in park, lake and beach bathrooms. They are open to everyone and dangerous places for bad people to lurk.
A number of children have been assaulted while their mothers stood outside of the bathrooms waiting for their child to come out.
Just information.
peg [/b]
Peg -- I hear you on this. Everytime I think about the age when people will start to look strangly at me if I'm taking my boys into the bathroom with me, I think about that case a few years back in So. CA where the little boy was murdered in a beach bathroom while a family member stood outside and waited for him. I think the boy was about 9 -- was brutally murdered. Very scary. I really don't know at what age I'll feel like they can go into a men's room by themselves --

Posted on: Mon, 09/11/2006 - 2:29pm
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gvmom, I hear what you are saying loud and clear. I just don't agree with you. I think you are well-intended, but I would never dream of telling YOU that I think you are doing your 7 yo a disservice by not getting him used to wearing the epipens he'll need to carry for a lifetime. Not my decision. (shrug)
This is a PA management decision that we made years ago-- with our allergist and our daughter. Her Hx means it would be catastrophic for her to ever be without them-- even "just next door" or "in the car."
I don't trust a school to be able to do it right-- and I know plenty of teachers. But I don't criticize those who send their kids for that basic decision when they run into trouble with the situation. Different strokes for different folks.
The bottom line is that I just disagree with you on this one [i]regarding my daughter[/i], and so does her allergist. He knows her, and has substantial experience with children like her-- and your son, I might add. He freely admits that this isn't for all PA kids at this age-- but it IS for ours.
As MB would say-- unique situation, IMMV.

Posted on: Mon, 09/11/2006 - 3:41pm
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[b]gvmom, I hear what you are saying loud and clear. I just don't agree with you. I think you are well-intended, but I would never dream of telling YOU that I think you are doing your 7 yo a disservice by not getting him used to wearing the epipens he'll need to carry for a lifetime. Not my decision. (shrug)[/b]
I'm glad you are hearing me. I just want you to know that it is my viewpoint. I don't expect agreement -- and I'm cool with agreeing to disagree. I just placed my opinion -- and kept feeling like I wasn't able to really clearly explain what I meant and how I meant it -- and also wanting you to take it in the way it was put.
I also wouldn't take offense to you telling me I was doing a disservice to my son, with respect to anything you might say to me. I respect your opinion -- and many of those you have placed on these boards. I would guess that you do think parents that don't begin getting their child accustomed to wearing their Epi-pens early on are doing a disservice to their children. I'm fine with your opinion being that, if it is. I also can hear it, and not agree with it.
I will say, that if our allergist felt it was in our son's best interest to be wearing his Epi-pen on him, I would be the one deciding what mechanism he would be carrying it in. There would have to be many criteria a carrier would have to fulfill for me to let him wear one, not the least of which is ensuring the carrier wouldn't be easily removed.
As for the school, trusting them to do it right -- well, who says I do? For me, I do my best to put measures in place that are as close to fail-safe as I can make them. I spent my time last year driving to and from school picking up my son everyday for lunch because things weren't in place that I was comfortable with. I don't have a problem pulling him from the school if we encounter problems again. I know it, and so do they.

Posted on: Mon, 09/11/2006 - 4:05pm
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while it was not in your post I felt sure you did not let her go in the bathroom alone, I just took advantage of the situation.
Peg

Posted on: Mon, 09/11/2006 - 4:50pm
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.
[This message has been edited by Flounder (edited January 08, 2007).]

Posted on: Tue, 09/12/2006 - 1:25am
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Lurking, listening, learning.
I've found this is to be a great thread with good food for thought in all directions -- will be sure to share it with DH.
Our PA son is 7 1/2, in formal school for the first time ever this year & we are working hard to find the balance for our family & son as to meds responsibility & ownership.
~Elizabeth

Posted on: Tue, 09/12/2006 - 2:12am
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Quote:Originally posted by Peg541:
[b]while it was not in your post I felt sure you did not let her go in the bathroom alone, I just took advantage of the situation.
Peg[/b]
And good advice it was-- excellent, in fact.
We tend to encourage the use of "family" restrooms which have individual locking doors for that reason. But I still check them first before I allow DD to go in, even if she wants to go alone. And I tell her to lock the door, and then I stand by the door. (This is obviously a subject I also have strong feelings about, huh?)
DH and I have asked DD some very pointed questions about [i]what[/i] exactly she can recall from her last major reaction. Unfortunately, she just doesn't. I simply don't know where the memory has gone, but she is no longer able to recall how frightening it felt. We are going to discuss this with allergist on Th at our appointment, that's for sure.
I certainly didn't intend for this to turn into a debate about how young is too young to self-carry-- but it seems to have.
So let me say for the record what my opinion is on that subject--in a [i]general[/i] way. I think that you should do it as soon as [i]your child[/i] is developmentally ready to. This may not be when [i]you[/i] are ready to let go. (And I think it is also very smart to carry a back-up just in case... DH and I both carry extra scrips as well, JUST IN CASE.) Built-in redundancy, you know?
I have NEVER regretted following our old allergist's advice. Even though (like others) we've had to replace a few epipens when they got too hot in the car...Even though I wondered what he was thinking when he told us to put them on her if she'd allow it. (This when she was 3.) His reasoning was much like Flounder's. Her reactions have not allowed enough time to [i]think[/i] about what to do. You have to set yourself up so that following your instincts will lead you in the right direction. My instincts tell me to [i]GO TO MY CHILD[/i] when something is terribly wrong. My first impulse is to drop everything and run to her. If her meds are [i]on her body[/i] then that saves time.
I also want to point out something that I don't think has been spelled out very well. Those who [i]have not put epipens on thier kids at 3,4,5 yrs old[/i] may not recognize this as an issue. There is a [i]HUGE[/i] difference between expecting them to [b]self-carry[/b] and expecting them to [b]self-administer[/b]. And I also think that this is why it is so important to get them wearing them early. If you wait until your child is eight to put epipens on, he or she may (rightly) be wondering if you are really telling him/her that you expect them to self-administer. Nothing you can say is likely to dispel that notion once it occurs to them. My daughter does NOT think that-- because she has the experience of me or her dad reaching into that pack and pulling out her inhaler or Benadryl. She knows we don't expect her to do it herself just because she has them on. She has asked us (in the last couple of years) when she will be expected to, and we've told her that if she feels she wants to do her inhaler herself, she can do that. We've shown her [i]how[/i] to administer an epipen. She's done this herself with an expired one. We've told her that she doesn't need to worry that she'll need to do this herself. But if we had just recently put them on her? She [i]would[/i] think it-- and no amount of us telling her otherwise would discourage her. It would be cemented in her mind that the one who carries is the one who controls the contents. KWIM?
And as for the notion that kids who are young will play with them or something, umm, when DD was young enough that this was a worry, she was [i]never out of direct adult supervision.[/i] Ever. If you look at the threads on this subject, it is a [i]non-issue.[/i]
Current allergist is delighted with how we are handing over our daughter's allergy to her-- a little at a time, but with the clear understanding that SHE owns it.
We are definitely going to have to re-evaluate the carrier she uses to make [i]certain[/i] that it is ergonomically more suitable. I am still suspicious that some aspect of the one she was wearing was just not quite right-- and that maybe this is why she took it off. I already know that a belt-carrier won't work, and she nixed DH's suggestion of a fanny pack immediately. (The little fashionista that she is.) Trouble is that it needs to carry her inhaler and liquid meds too. (sigh) So it needs to be washable, indestructable, just the right size, and "pretty."
Of course, she and I both disagreed with DH's suggestions for either duct tape or stapling as a means of keeping them where they belong. [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img] [i]I think he was kidding....[/i]

Posted on: Tue, 09/12/2006 - 4:25am
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Quote:Originally posted by Corvallis Mom:
[b]
Of course, she and I both disagreed with DH's suggestions for either duct tape or stapling as a means of keeping them where they belong. [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img] [i]I think he was kidding....[/i] [/b]
LOL, DS left his epi belt in a washroom one time and we didn't realize it until the next day as we were hunting for it to go to school. I phoned his school to tell them that he was not wearing it and to possibly duct tape or staple his back-up epi's to his forehead until I could go retrieve his belt and drop it off at the school. Apparently I'm not the only one who thinks this may solve the problem.
He doesn't take it off when out of the house, but had had a tummy ache and the belt was hurting him while he was going to the bathroom (I won't go into any more gory detail here)
[This message has been edited by cynde (edited September 12, 2006).]

Posted on: Tue, 09/12/2006 - 7:20am
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Quote:Originally posted by Corvallis Mom:
[b] Of course, she and I both disagreed with DH's suggestions for either duct tape or stapling as a means of keeping them where they belong. [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img] [i]I think he was kidding....[/i] [/b]
ooo. this reminds me of when my husband took a look at an abscessed abrasion on my knuckles when we were dating. (washed my hand momentarily with a pressure washer---no. never, again)
He said, "It should be broke open and cleaned out with a copper wire brush."
I cheerfully followed him thinking he had some Neosporin and was speaking metaphorically...
It was about as bad as the time I allowed him to remove a treble hook (embedded x2) from my wrist. [img]http://uumor.pair.com/nutalle2/peanutallergy/eek.gif[/img]
no advice, none at all, just thankfull I've kept my tetanus shot up to date. [img]http://uumor.pair.com/nutalle2/peanutallergy/tongue.gif[/img]

Posted on: Tue, 09/12/2006 - 3:23pm
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mommabear!! - Ow! Ow! pressure washer - hook! men - yikes!!!!

Posted on: Wed, 09/13/2006 - 9:37am
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Corvallis Mom, I'd just like to thank you for sharing your story. It's given me a lot to think about with regard to Ian. And I'd like to thank everyone who participated in this discussion for keeping it civil and productive. Bravo, everyone!

Posted on: Wed, 09/13/2006 - 10:13am
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I have found this thread so interesting. My almost 3 year old daughter was diagnosed last month and we are still trying to become acquainted with her diagnosis. I can barely remember to carry her pen, I can't imagine her carrying it, but I may need to reconsider that idea. I am still mourning the fact that I will never bake peanut butter cookies. I guess I need to move on. Thank you all for sharing of your stories. I never knew nap time could be so informative!

Posted on: Wed, 09/13/2006 - 2:24pm
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PA newbie:
...but you can bake sunbutter cookies and they are very yummy. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] they do tend to turn green the next day (which doesn't affect the taste) but that's all the more reason to eat them up fast. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
joey

Posted on: Wed, 09/13/2006 - 2:26pm
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Don't despair! Soynut butter makes great cookies, too--and they don't turn greenish...
Cathy
[This message has been edited by Momcat (edited September 14, 2006).]

Posted on: Wed, 09/13/2006 - 2:58pm
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My gifted son has also forgotten his previous reactions. It sounds like your daughter has several foods she is allergic to, but he is only allergic to PA and tree nuts. Here recently, age of 10, he has become quite relaxed regarding his allergy. I promptly showed him the thread under reactions that honor those who have died from their allergies. I think he finally 'gets it'!

Posted on: Wed, 09/13/2006 - 10:17pm
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There is a remedy for keeping the sunbutter from turning green...either add some lemon juice or reduce baking soda/powder. This balances the ph and keeps them from turning green.

Posted on: Wed, 09/13/2006 - 10:19pm
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.
[This message has been edited by saknjmom (edited September 14, 2006).]

Posted on: Wed, 09/13/2006 - 10:21pm
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double
[This message has been edited by saknjmom (edited September 14, 2006).]

Posted on: Wed, 09/13/2006 - 10:50pm
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double post
[This message has been edited by saknjmom (edited September 14, 2006).]

Posted on: Wed, 09/13/2006 - 11:31pm
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Corvallis Mom, I just wanted to let you know I think you have done the right thing. My ds is 8 and we always carried his epipens for him. Well, about 6 months ago, I bought him a belt. He hates wearing it and I have to make him put it on when we leave the house. It is not something ingrained in him.
The medic alert bracelet we started when he was 3 or 4 and he doesn't even notice it is on. I wish we had done the same with the belt. I think it helps to start young so it just becomes part of them.
Glad you found the bag!

Posted on: Thu, 09/14/2006 - 5:23am
Corvallis Mom's picture
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Quote:Originally posted by Naer74:
[b]My gifted son has also forgotten his previous reactions. It sounds like your daughter has several foods she is allergic to, but he is only allergic to PA and tree nuts. Here recently, age of 10, he has become quite relaxed regarding his allergy. I promptly showed him the thread under reactions that honor those who have died from their allergies. I think he finally 'gets it'![/b]
Spoke with our allergist about this issue this morning. He thinks that although it can certainly be a problem with [i]many[/i] kids, DD isn't likely to be one of them. He feels that way because we have always had such a tight comfort zone and we are VERY upfront about why with her, she understands it can be fatal, and she has a lot of reminders in the form of contact and aerosol reactions. So she definitely knows she's still very allergic, and she doesn't otherwise make questionable decisions, even when we are not making them for her. He said, "Oh, I don't worry about XXXX....Well, I worry about [i]anybody[/i] with that allergy, but you know what I mean."
This is such a terrible catch-22. Part of me wishes that it had happened when she was 4 and not 2. Allergist laughed about my observation that our kids don't have memories to help them if we do our jobs well... [img]http://uumor.pair.com/nutalle2/peanutallergy/rolleyes.gif[/img]
But it bears watching, definitely. He laughed and said that the duct tape was always an option for keeping the epipens on. LOL! [img]http://uumor.pair.com/nutalle2/peanutallergy/biggrin.gif[/img]
Hey-- thanks for the tip about the sunbutter cookies, saknjmom! I'll remember that.

Posted on: Thu, 09/14/2006 - 8:06am
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Thanks for the soybutter and other idea. My daughter had a +1 on soy also, so unfortunately those are out too. (We are just being extra careful.) I will check around for recipes for sunbutter cookies and if you saw my 3 year old you would know that we would make short work on those cookies that they would never get the chance to turn green. Thanks again.
Good news CMom. I am glad that you have such a wonderful and understanding doctor. I agree with giving the information to the kids at every level and you are her parent for a reason. You know your child and what is best for her. (You can buy duct tape in large quantities at the Home Depot!)

Posted on: Thu, 09/14/2006 - 1:04pm
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pa newbie:
both my PA girls' second biggest reactions on skin testing (after peanut) are to soy. however, we have never had "problems" with them eating soy. they do have some eczema but, as far as we know, the soy "allergy" is not dangerous (in our case) and certainly does not cause symptoms of anaphylaxis in my girls. that's not to say others don't have a big problem with soy, but we don't. i would follow your allergist's suggestions. (my girls are also "allergic" to wheat, egg, chocolate, all kinds of pollens, grasses and dust. peanut is our only serious allergy though). my girls' soy skin test reaction is actually a 3+, i believe! we avoid peanuts like the plague (out of necessity...i've seen anaphylaxis and it ain't pretty) but we live like we have no other allergies in this house.

Posted on: Thu, 09/14/2006 - 2:58pm
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Thanks JB. I am still VERY new at this allergy thing (diagnosed last month) and I am trying to avoid anything that might cause her harm, but I don't know where to even start. She has a slight throat thing with soy and her face breaks out. I just thought I should avoid it if I could. I don't want her to miss out on her childhood, but I want to protect her too. (I am terrified of the anaphylaxis.) When you said that you live like there are no other allergies, do you follow the recommendations for dust? My daughter has dust and dust mite allergies and her poor sweet girlie room looks like an industrial dormitory now, because I followed every recommendation for dust prevention. If I could add back cute pillows and drapery I would be in heaven. You sound like someone in the know (your allergy list is extensive) so any help you provide would be wonderful.

Posted on: Fri, 09/15/2006 - 12:58am
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if you are referring to me, i wouldn't say i'm in the know so much. i just have been dealing with our allergies and issues for 10 years now. lots of practice and lots of figuring out what has worked for us, what hasn't, and what definitely won't (peanuts). haha.
as far as the dust and dust mite allergies... our ped. allergist told me to keep the house as dust-free as possible but not to worry too much since my girls don't seem to show signs of dust/dust mite allergies. we only found out due to testing.
one of my girls has very mild asthma that only seems to rear its head a couple times during the year (seems to be cold weather coupled with exercise). he said i may need to make further changes to eliminating sources of dust and dust mites if i notice her asthma changing and becoming worse.
i did remove the stuffed animals from their room (we have a toyroom downstairs for that sort of stuff) and any stuffed, plush, or fabric type items that were unnecessary. i covered their mattresses and pillows with allergy type coverings (i'm sure you know the ones....plastic, zippered, etc) and i try to keep their rooms free of dust (but i'm a terrible housekeeper...).
however, they each still have a dust ruffle on their beds (interesting name, don't you think? haha) and a small valance instead of curtains. and, they have blinds in their rooms. one of the girls does have an overstuffed pink gingham chair and ottoman in her room for reading (it probably should have been removed...but it's so cute).
so..i've made some changes but nothing really, really drastic.
i have a younger brother (yes...i'm 40. he's 8. my dad started over with someone my age. long story....) and he has serious issues with asthma and has had to have BIG changes done in their home. they went to all wood floors in the entire house, he has no extra stuffed or fluffy items in his bedroom, they have no pets indoors, etc. they are much more careful with his dust and dustmite allergies; because they have to be. they are big asthma triggers for him.
oh yeah, by the way, we also have two small indoor dogs. the ped. allergist advised us to get rid of them but added that he probably wouldn't if they were his and he was in our situation. they still sleep at the foot of my girls' beds. we'll change that in the future if necessary but so far, so good.
so...it would be hard to compare your situation with ours because the changes you've made for your child may be completely necessary. i guess it depends on what types of problems dust and dust mites cause for your child.

Posted on: Fri, 09/15/2006 - 4:03pm
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Joeybeth,
Thanks for the heads up about dust. My daughter does not have to much of a reaction with dust. When I received all of the stacks of paperwork from our allergist last month I thought I needed to do everything. We spent big bucks on redoing her room with top of the line covers, etc. She gets two stuffed animals a week and they are in rotation with others that I don't have to wash all the time! (Although Mickey and Minnie get hot washed weekly to be taken wherever we go.) I tried to work the allergy angle to get wood floors for the house, but DH didn't go for it. (Shocking, with me staying at home with our daughter and all.) We are learning as we go what works for us too. We are currently doing a kitchen remodel and she has had no incidences and there was so much dust! I know that I am being overzealous with this, but anything for my only child. We will hopefully be as astute as all of you who have done this for a while. Thanks for the information and in such a caring manner. I am so glad that I stumbled, still stumbling, will continue to stumble on, in, and around this website. You girls rock!
P.S. My allergist told us to get rid of the dog too. We told him that she has been here longer than our daughter and as long as we have been married so she isn't going anywhere. Of course now they are like sisters and do everything together. :-)

Posted on: Sat, 09/16/2006 - 2:46pm
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Wow--you're too busy to come to the boards for a few days and it's amazing how things have changed. This thread really took off!
About self-carry and self-administer: yes, a huge difference.
DS hasn't carried but does now on school field trips (and let me say that he hasn't had the kinds of reactions that Corvallis Mom's DD has had--I completely get why she has self-carried for ages).
We tell him and the adults around them that even though he can train them to use the Epi (and he loves to do that), we cannot at his age expect him to self-administer. I usually see a light bulb go off in someone's head when I say that. It takes a second or two.
But I have told him he [i]can[/i] self administer if no one else is clued in to his danger. That he can feel free to take charge if need be.
He's scared of the epi.
But he saw me use it on myself after a shellfish reaction (I'm SFA). And I had him count to 15 while I had it in and rub my leg afterward.
And I told him that if there is a situation where I am having a reaction and am unable to administer myself, he can feel free to administer the epi for/on me, but I tried to make it clear that it's not his responsibility to do so. That I won't be disappointed if he doesn't. I didn't mention that I could be dead otherwise [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img], but I don't want him to feel it's up to him or guilty if something happens to me. By the same token, I want him to feel empowered to use it if he can in those situations. KWIM?

Posted on: Sat, 09/16/2006 - 3:19pm
Anonymous's picture
Anonymous (not verified)

Wow, a lot of interesting and thought provoking discussion in this thread. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
When my son started school at 3-3/4 years of age, it was a requirement of the school that he wear his EpiPen. I wasn't a member of PA.com and couldn't raise the ? here, so on the fanny pack went.
I just came across, in a search this week, where I had raised the question when I think he was about 6 about when your child starts to wear their EpiBelt full-time (like not just at school).
And I would have to say, just thinking about that thread, that it was probably at 6 that my son started wearing his EpiBelt full-time when he was not in the house - even for short excursions to the grocery store.
In 7 years of school, I think he has forgotten less than 5 times to put his EpiBelt on before going to school and then we'll get there and it's like darn. Then, we go into the school and get his emergency medical bag from the office and he carries that for the day instead.
I guess because it is clipped right on him, even though he would change for gym, he has NEVER forgotten to come home from school with it (or anywhere else). What I find interesting about this (kinda comical interesting) is that this is also the child that will forget a specific textbook required that evening; his lunch bag; any number of things on a regular basis (what's it been - two weeks of school and he's forgotten his lunch bag at school twice already) and yet he's never forgotten the EpiBelt. Again, because I think it doesn't come off of his body.
I'm actually thankful to the school for their requirement because it didn't give me an option, KWIM?
Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
------------------
If tears could build a stairway and memories a lane, I would walk up to heaven and bring you back home with me.

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