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Posted on: Thu, 09/14/2006 - 5:23am
Corvallis Mom's picture
Joined: 05/22/2001 - 09:00

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
PA Newbie's picture
Joined: 09/13/2006 - 09:00

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
joeybeth's picture
Joined: 09/01/2006 - 09:00

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
PA Newbie's picture
Joined: 09/13/2006 - 09:00

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
joeybeth's picture
Joined: 09/01/2006 - 09:00

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
PA Newbie's picture
Joined: 09/13/2006 - 09:00

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
McCobbre's picture
Joined: 04/16/2005 - 09:00

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.

Posted on: Sun, 09/10/2006 - 11:50am
Corvallis Mom's picture
Joined: 05/22/2001 - 09:00

... [i]and as she hit "submit", her cell phone rang![/i]
(And it wasn't the angry DH... [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img] )
It was the ranger's station at the State Park!!!!
Evidently the cleaning crew went through the restrooms about ten minutes before DH's whirlwind tour of the park garbage facilities... finding DD's black satin Tinkerbell bag (with the star-of-life pin)
and returned it to the state park tollbooth a few miles up Hwy 101.
Can you say "Three trips to Newport in one day?" (sigh).... but I am just so relieved that some little child didn't find them. Whew!!!
I think DH intends to ride over with us... the better to lecture DD where she can't get away, I think. [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img]

Posted on: Sun, 09/10/2006 - 11:51am
3xy1PAinNH's picture
Joined: 08/07/2006 - 09:00

Ugh, how disappointing that she lost it!
There must be a typo in your post...it indicates she is seven and has been carrying her epi's for 5 years, which would mean since she was 2??? Did I read that correctly? Or do you you mean 17 and she has been carrying them since she was 12?
I have a 2 year old, 4 year old and 9 year old, and I could not imagine ANY of them having the responsibility for carrying an epi. My nine year old is close..and he is very cautious...but personally, it would be unrealistic for me to think any of my children should be responsible for something like that at their current ages!
You must mean 17, b/c it sounds like she left it in a public rest room while in there without you?
I would say if she is 17, then she does need to be spoken to about being more responsible,and I would make her pay for some of the replacement cost.
If she is 7, then I think perhaps your expectations are high for her age....just my opinion.
Also, I had my ped right the prescription so I could get a couple filled at once, one for school and one for home...then a couple of months later I had it refilled again,then a couple of months later again...so I right now have 8 kicking around. 4 packages of 2 in various stages of experation (four in the house, four in the diaper bag/purse)...plus two brand new ones at ds's school.
Fortunately my insurance covers all but a small percentage of the cost.



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