new little family problem...

Posted on: Thu, 10/23/2003 - 4:03am
California Mom's picture
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Joined: 07/14/2000 - 09:00

O.K., I will try not to be too confusing, which may be tough; especially since I can't edit my posts these days...

My dh's brother's daughter (my niece by marriage) who is 8, has recently begun reacting to peanuts. I don't know if it is actually a new allergy, or if she somehow managed to avoid peanuts (because of a dislike) to the point where she did not react. So, at the very least she has become more sensitive.

My understanding, though my MIL, is that Julie (fictitious name) has had three reactions in the last month or so. Apparently the first was to actually ingesting peanut butter. (This may have been the first time in recent memory that she actually ate peanut butter, apparently.) The next two times appear to have been contact reactions: one was from a classroom project involving handling cereal that had nuts in it; the second was from sitting next to a child eating pb & j. The reactions, in all three cases, were halted with Benadryl.

According to MIL, Julie has been to an allergist who sent her off for RAST testing. As far as I know there have been no results, yet. MIL expressed concern over this latest development in her grand daughter, but also expressed relief that her reactions have been halted by Benadryl. She also said that the school has an epi-pen but the after school child care program does not.

Here comes MY problem: BIL and SIL have not discussed this with dh and I personally. We live across the country from each other. We always get along well during visits, but don't have much communication between visits. They are well aware of my dd's pa and tna, and they know we carry epi-pens for her.

I was up during the night last night overcome with anxiety for my niece. I began to worry that perhaps she is not constantly with an epi-pen, and that she could be in grave danger. I would like to call or e-mail my BIL and SIL offering support as well as letting them know (in case their doctor didn't) that past reactions are not good predictions of future reactions, and that they should always have at least one epi-pen with Julie.

Now the [b]real[/b] problem: dh does not want me to do this. He is the kind who never wants to make waves, or say anything to anyone that may be even slightly offensive in any way. I do not want to offend anyone, of course, but I am worried that my niece could be in danger. I would like to try to find a really nice way to offer support and at the same time just make sure they know the importance of always having the epi-pen available.

dh says that Julie is under the care of a doctor so we have to assume the doctor filled the parents in on all the important info. I know, from reading these boards, that some doctors do not fill parents in on everything they need to know. I am hoping that since this doctor sent Julie for a RAST test he may be one of the doctors who does keep up with the latest knowledge. Maybe I am worrying for no reason.

Dh is O.K. with me sending a short e-mail that only offers our support if they need it, but no factual information.

This is [b]his[/b] side of the family so I sort of feel like I should respect his wishes. On the other hand, if I am worried then don't I have the moral obligation to do whatever I can to be sure Julie's parents are fully informed?

Meanwhile, I did put in a call to MIL and am waiting for her to call back. I think I may use her as a "messenger", although dh does not want me to involve her, either.

Any ideas? By the way, I know I am "preaching to the choir" here; but try to be objective. [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img]

Posted on: Thu, 10/23/2003 - 4:59am
CorinneM1's picture
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Joined: 06/20/2002 - 09:00

Now the [b]real[/b] problem: dh does not want me to do this. He is the kind who never wants to make waves, or say anything to anyone that may be even slightly offensive in any way. I do not want to offend anyone, of course, but I am worried that my niece could be in danger. I would like to try to find a really nice way to offer support and at the same time just make sure they know the importance of always having the epi-pen available.
dh says that Julie is under the care of a doctor so we have to assume the doctor filled the parents in on all the important info. I know, from reading these boards, that some doctors do not fill parents in on everything they need to know. I am hoping that since this doctor sent Julie for a RAST test he may be one of the doctors who does keep up with the latest knowledge. Maybe I am worrying for no reason.
Dh is O.K. with me sending a short e-mail that only offers our support if they need it, but no factual information.
This is [b]his[/b] side of the family so I sort of feel like I should respect his wishes. On the other hand, if I am worried then don't I have the moral obligation to do whatever I can to be sure Julie's parents are fully informed?
Meanwhile, I did put in a call to MIL and am waiting for her to call back. I think I may use her as a "messenger", although dh does not want me to involve her, either.
Any ideas? By the way, I know I am "preaching to the choir" here; but try to be objective. [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img][/B][/quote]
I think that you have to respect your husbands wishes in this circumstance. Maybe they haven't contacted you yet bc they are waiting to find out the results. Clearly they are talking about it with the MIL, so I am sure much of the information that they do have on PA has been through you in the past anyway.
Send a short email stating what you heard from your MIL, and just to keep you posted on the results of the RAST and that they are in your thoughts. I am sure that you would be one of the first people that they contact should they find out the results are positive.
Perhaps right now they are in a state of wishful thinking and don't want to get themselves all worked up over the possiblity of their daughter having PA without medical verification. I mean after all, haven't we all been there too?
Keep us posted as to what happens with your neice and this situation.

Posted on: Thu, 10/23/2003 - 5:14am
becca's picture
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Joined: 05/22/2001 - 09:00

I just had a page totally diappear in the middle of typing. Argh!
Well, I completely understand how the dynamic is working in oyur dh's case or his family's case. Mine is very similar. We faced a similar situation, but deeply personal, and never could ask for info from his sister. I really could not think of a way either in his family. It involved our pregnancy and a nephew with a genetic syndrom and genetic testing. We would have been able to forego alot of angst and testing had we simply been able to ask his parents if they had it done.
I don't know if my advice can work in the family dynamic. But it sounds friendly, just that with the distance, they don't call you often. Maybe say you heard about it from M-I-L and you are glad they are seeing an allergist. Maybe commisserate and work in a statement about what an expense or inconvenience it can be getting all the epipens or always having one around or such. Not asking or telling, but getting your information across? So passive aggressive, I know. Or perhaps sending along some articles where it is included that one always be available?
How has the dynamic been with them regarding your child's allergy? Do they understand and cooperate? Have they been supportive? Maybe they are fine with you saying something, and it is your dh being sensetvie to something not really there?
My dh is so similar. Does not like to speak up about things like this. I am pretty much the messenger for dd's allergies even though he does what I say and is careful.
If I am not much help, I at least think I totally understand your frustration. In my family, we just say what is on our minds. Especially when my Mom was living! Maybe too much! Good luck, Becca
Sorry about the typos. Can't deal with the editing with arrows and all.

Posted on: Thu, 10/23/2003 - 5:27am
California Mom's picture
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Joined: 07/14/2000 - 09:00

Thanks to both of you, so much. Becca, it's interesting that your dh's family has a similar dynamic; I figured you all would just thing my dh is a wacko. (After all, somtimes [b]I[/b] think so! [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img] )
You both gave me some good ideas. BIL and SIL [b]have[/b] been extremely supportive of my dd's allergies. They are always really careful with what food they buy, etc. when we vacation together. They have also been responsible for dd at times (when dh and I go out for a few hours, or something) and have been so great about the epi-pen, etc.
Now that I write all of that I realize that I [i]probably[/i] really don't have to worry. Still, to me it seems so odd that I have to walk on eggshells around something that seems so straight forward.
I guess the irony (if you could call it that) for me, is that my niece's pa seems to be of an even more sensitive variety than my dd's, at this point. My dd (almost 9) has never reacted to contact, for example. I guess that's why I'm so worried.
I'll try to calm down and just send off a friendly e-mail. Meanwhile, I'm a bit nervous that they may have found this site and could be reading this. Hi guys, if you are!!! [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img]
I do tend to get anxious about things, and while I have been doing much better, I guess every now and again I am still plagued.
Thanks again, you were both really helpful.
[img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Posted on: Thu, 10/23/2003 - 6:30am
smack's picture
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Joined: 11/14/2001 - 09:00

I think you care a lot about your niece and are worried about her having a allergy that can be life threatening.
Your just a little anxious because you know all the work that it takes in keeping your child safe.
I would just e-mail your SIL and let them know they should be totally on guard right now(screw the Rast results it sounds like your niece is allergic)symptoms are the best test for allergies and tests are secondary measures that your allergist likes to go by.
Reactions are suppose to get worse every time so say what you can and your SIL needs to get a Epi-pen. If the Doctor didn't send her out the door with one that is wrong considering all of her reactions thus far.
Let us know how everything goes, your SIL unfortunately is probably going to be our newest member once the RAST results are in.

Posted on: Thu, 10/23/2003 - 7:48am
becca's picture
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Joined: 05/22/2001 - 09:00

Maybe make a phone call to Chris and delete the thread, if you are concerned they find this. It is a possibility. You would hate to have a misunderstanding over posting here for help or guidance. becca

Posted on: Thu, 10/23/2003 - 12:16pm
Chicago's picture
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Joined: 04/21/2001 - 09:00

Maybe in your supportive, brief email or note, you can recommend (or say you can recommend) some nut free products such as the vermont nut free or pan handle options. For people trying to think all the difficulties, knowing their are niche companies that help us out is comforting. That also sets you up as more of a helpful resource instead of the family "allergy nag".
Sounds like she is allergic to me too, but since it is such a late onset I hate to judge it. I am sure that they will, in time, all come to (and change!) their own comfort zone in dealing with it (as we all have). My vote is that you are better off now being low key and seen as a good resource. As we all know this is a journey, not a destination, and your BIL and SIL and niece are potentially just starting out on the path. I am afraid that if the doc tells them one thing and you say another (even if backed up with loads of info), they may be put off. You should (IMO) be in the role of a teacher / supporter.
Wow - now I can't edit posts. I had read about the problem but here it is.... I can edit them if I go back in... Hmmm need to add my info to that Off Topic Thread.
So, hang in there, and know that since your BIL and SIL have been good with your dd, the chances are they will end up doing the right thing. And your role as a helper, rather then a (forgive me) nag will be SO VALUABLE.
[This message has been edited by Chicago (edited October 23, 2003).]

Posted on: Thu, 10/23/2003 - 1:25pm
becca's picture
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Joined: 05/22/2001 - 09:00

Just after typing my response here, I took my dd to ballet and got into a conversation with the Mom of her classmate. Just diagnosed with multiple food allergies after some bouts with hives the past summer. An exhaustive list of things and odd instructions of allowing small amounts of some foods and none of some of the others. I was starting to offer my advice(or our management really) and backed down as I realized how overwhelmed this mom is. Not bloodwork yet and seems the child(4 yo) reacted to everything on her skin incl. nuts.
Just made me pause and think about how overwhelming it is when the info starts pouring in. And also, with this child, at 4, may not be truly + to all the skin tests if her skin is hypersensetive. Even her control hived up(the one that should not, not the histamine).
So, it might be good to give them time to ferret out all the test results and figure their comfort zone, as a previous poster said. I just felt bad for this mom today wondering what to even feed her child. Sometimes support is best at first.
Just coincidence, but made me think of your post and my previous response. becca

Posted on: Thu, 10/23/2003 - 2:22pm
California Mom's picture
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Joined: 07/14/2000 - 09:00

Thanks again, everyone. You all are sources of much wisdom. I am feeling a lot calmer now, and I will heed the sensible advice I have been given.
Do I really need to get this thread deleted? Have I said anything that could possibly be misconstrued? I'll be gone for a few days but will check in when I return.
Thanks again!

Posted on: Thu, 10/23/2003 - 10:55pm
Chicago's picture
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Joined: 04/21/2001 - 09:00

[This message has been edited by Chicago (edited October 24, 2003).]
[This message has been edited by Chicago (edited October 24, 2003).]

Posted on: Fri, 10/24/2003 - 12:04am
becca's picture
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Joined: 05/22/2001 - 09:00

California mom, I do not think you said anything that you should worry about. You had just expressed some concern, so I threw that out there. It is easy to do with a phone call quickly if it was a concern.
I just know there has been a problem for other board memebers when this has happened. I think you are just wanting to reach out and help and offer support and feeling awkward about it because a) you have the information second hand from M-I-L and b) your dh feels funny you approaching them. It made me wonder if there is a reason he is concerned this might actually "make waves."
Take Care, becca

Posted on: Fri, 10/24/2003 - 12:27am
ghen's picture
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Joined: 08/21/2003 - 09:00

Call me insensitive but WHY??? I personally think life is too short to walk around people like they are egg shells. It would be one thing if you wanted to say something that would personally hurt them or were drudging up something from the past, but all you want is to share your knowledge. Sorry, I guess I don't really understand what the big deal is.
I do agree, as I'm new to PA with my 2yo son, that all of this could be overwelming. My DH will tell me to get off here sometimes because I'll start freaking out [img]http://uumor.pair.com/nutalle2/peanutallergy/biggrin.gif[/img] But, really, you could email them with support, which is just a nice thing to do. They know you have info, so why not just offer to share your info and resources if and when they are ready so they don't have to start from scratch...and leave it at that. Then, when they are ready they can ask you. Just my $.o2.

Posted on: Fri, 10/24/2003 - 12:38am
Anonymous's picture
Anonymous (not verified)

California Mom, assuming sil discovers this site in a search for info, and makes the connection to you -- if I were her, I might actually cry. Not frustration or anger, but, because I would know there was someone I *personally* knew that could and especially would help me.

Posted on: Fri, 10/24/2003 - 6:36am
Kim M's picture
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Joined: 06/09/2001 - 09:00

California Mom, I agree that it's a touchy situation because of your husband's feelings about it. While I certainly would have wanted anyone with experience to share their knowledge with me when my daughter was first diagnosed, it is your husband's family and his wishes need to be respected. I would let them know that you are there for them, and comment in an offhand way that it has taken you so long to gather all the information that you have now, you wish you could have gotten it all at once in the beginning. (Not exactly subtle, I know.) But maybe that will prompt them to ask you to share.
Given that they have been understanding and supportive of your daughter's allergy, I can't understand why your husband is being so cautious about contacting them, but I would guess that after the initial shock is over they will look to you for help. Lucky girl to have such a caring aunt!

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