If you know your child is still allergic, what\'s the value of repeating CAP-Rast?

Posted on: Sat, 07/08/2006 - 1:55am
Gail W's picture
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I'm struggling with whether or not to have Mariah retested. Her one and only CAP-Rast was 7 years ago when she was age 5. She was 6+ ---->100ku/l. We know she is still allergic to peanut based on her having contact reactions.

But we're curious about her numbers, and so is her allergist. At each annual visit her allergist and we discuss having a repeat CAP Rast. But because Mariah objected, we haven't.

We have our annual appointment in a couple weeks, and DH and I are again considering having Mariah retested. I'm trying to determine what the practical value of having a repeat CAP Rast really is. . . I mean, even if her numbers have gone down considerably, what difference would it make in terms of how we live? We feel certain that Mariah is still allergic to nuts, and I'd still be just as vigilant, so I wrestle with what the whole point is in getting a new number.

For those of you who have your children retested, can you please share with me what this information gives you? For example, did you think there was a possibility that your child may have outgrown their PA? If you were curious about what direction the numbers were going, how did you use that information?

For those who have chosen not to retest, can you share your rationale?

Thank you. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Posted on: Sat, 07/08/2006 - 2:35am
Corvallis Mom's picture
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We had RAST done about four times before DD was five... but really, since the first one (pn was 18? 22? this was right after anaphylaxis), we haven't seen the pn number do anything. It stays at >100-- though we had one RAST at about 4 where it went down to 80-something.
We haven't had another CAP RAST in about three years. NO need. We still see absolutely [i]crazy[/i] sensitivity to aerosol and contact, so we already know what it would say for pn... and frankly, we don't really want to know what our allergist's skin testing has done to the egg numbers... though maybe we should know. Could be that one is >100 now too. (sigh) She now has aerosol sensitivity to that one too.
The three we [i]are[/i] curious about actually are some that we had tested many years ago and not since... as we didn't feel (at the time) as though they were clinically relevant. Milk, sesame, and tree nuts-- pistachio in particular, since that one wasn't ever done.
I guess I'd like to know what the pistachio number is to guage just how severe a skin test to pn might be. Our normally sanguine allergist was frankly alarmed by her pistachio skin test. I also would like to get a "second" opinion on milk, since there have been times in the past year when she has reacted with hives and eczema and oral itching-- even to traces. But SPT was negative. Go figure. We avoided anyway until she seemed to tolerate it better (about a month ago now... keeping our fingers crossed...).
Her sesame numbers at 3 yo suggested she was class 2. She has continued to eat things which contain sesame periodically without any apparent ill affect. But it would be nice to know if the numbers are climbing.
We may have to bribe DD with Build-A-Bear for another blood draw. But she might like it better than the last round of skin tests. A Faustian bargain indeed. [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img] But it is probably time. Besides, maybe we can track environmentals as she gets into her second year of immunotherapy.
Ahhh... our rationale.
We were pretty data happy at first. (Comes with the occupations... [img]http://uumor.pair.com/nutalle2/peanutallergy/redface.gif[/img] )
Then we realized that it was just disappointing to us and a bit hard on our allergist as well. (I think he felt like a failure after the last one in which the egg number climbed into class 6 territory...)
And so we decided that we will no longer test unless we know what we will "do" with the results. Results that show pn going from >100 to 80 aren't going to changes a thing...KWIM? Now, I still think it is a good idea to have reasonably fresh test results for schools and other skeptics. So we will probably do another blood draw and RAST this year. DD is 7.
[This message has been edited by Corvallis Mom (edited July 08, 2006).]

Posted on: Sat, 07/08/2006 - 3:06am
Gail W's picture
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Quote:Originally posted by Corvallis Mom:
[b]We may have to bribe DD with Build-A-Bear for another blood draw. [/b]
Ah yes . . .[i]the bribe[/i]. Mariah has declared a Coach purse as her reward if we decide to go ahead with the CAP rast. She's determined that a Coach bag is [i]practical[/i] because she can carry her epi-pen and cell phone in it. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
Our allergist has been so supportive and has taken a special interest in Mariah. [i]He[/i] is the one who is curious. My DH sees zero practical use to retest (and since Mariah has strong objections sees it as negative), and I'm in the middle. Just trying to figure out what a new level would give us. . . aside from satisfying anyone's curiosity.
Edited to add: do you think we would gain any knowledge if her numbers went down? What would that tell us?
[This message has been edited by Gail W (edited July 08, 2006).]

Posted on: Sat, 07/08/2006 - 4:30am
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My 5 year old PA & DA son has been skin tested once and had the blood test twice (once at 3.5 years and once at 5 yr). While I know that the results from the blood test (and the skin test) can be misleading, those results are the only ones I can get without feeding him what he is allergic to. His numbers went down on the second blood test, so my husband and I took it to mean that we were doing the right thing in avoiding those foods, even it is SUCH a pain in the butt.
Now, I have to say that he is a class 2. I don't know if my thinking on testing would be different if he tested off the charts, as so many do. But since his numbers are so low (relatively), I like to watch them, and hopefully at some point they can indicate that a second skin test is called for.
------------------
[i][b]Allergy Eliminator [/b][/i]

Posted on: Sat, 07/08/2006 - 4:49am
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Gail,
We have asked ourselves this very same question over time. Would it really do any good to retest when we know how incredibly allergic he is? When he was first diagnosed, our doctor actually told us not to bother to keep retesting him. Our new physician (due to our other's retirement) does like to retest. We haven't - simply because we don't know what we'd do with the results once we got them - what we would do different - and the money. We also feel that the numbers could be misleading in that he still reacts no matter what the numbers. Is there anyone that has gotten retested, the numbers went down, and it made a difference in what you do?

Posted on: Sat, 07/08/2006 - 5:30am
Corvallis Mom's picture
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Quote:Originally posted by Gail W:
[b] Ah yes . . .[i]the bribe[/i].
...a Coach purse as her reward ...[/b]
[img]http://uumor.pair.com/nutalle2/peanutallergy/eek.gif[/img] Maybe we'd better do this now, while Build-A-Bear will still do.
(I can see my "Princess" stopping at nothing short of a one-of-a-kind, designer original...)
[img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
As an accessory hound myself, though, I can see her point. [i] Verrrrry, uh- practical.[/i]
She wouldn't be likely to leave THAT lying around, too-- which is a bonus, I suppose.

Posted on: Sat, 07/08/2006 - 8:38am
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I've wrestled with this issue, too. Ian has never had a CapRAST. He's never been tested for peanut since his original SPT 5 years ago. I was leaning toward testing until he had a reaction in May (his first reaction in 4 years, and to possible traces on a lunch table that was supposed to be nut-free). That reaction confirmed for me that he is still quite sensitive, and we won't be any more lenient in how we handle it than we are now. Instead, we'll be tightening things up at school.
So what is the benefit to testing in Ian's case? Probably none. He won't like it, and we don't need the additional expense. He already puts up with allergy shots, and one year into it they seem to be working for him. Testing for those will probably confirm the results, but I don't feel we need it just for the environmentals.
Maybe we'll do a CapRAST in a few years if he manages to stay reaction-free. Then again, maybe we won't.
*shrug*

Posted on: Sat, 07/08/2006 - 9:35am
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Gail-
I just had my dd, age 8 1/2 retested on Friday.
We seem to do it every year or 2- I wanted to do it to see what her numbers are doing.
I know we will not change anything but I am curious to see what they will do-her numbers.
Now that being said, my dd is also allergic to all tree nuts and sesame- I would just like to see what is going on in general.
Your point is a good one though- WHY???
I think if Mariah is ONLY allergic to Peanuts it would be a good idea because if her numbers go down or even up- with all the new trials going on it may be interesting to know a more recent number to see if you may do one of these studies or even treatments when they get approved.
My dd did not really object to the bloodwork- it is fast and simple- a frozen yogurt after was good enough for her- thankdfully- maybe in a few years that will change!
I like to see numbers, maybe that is my problem!

Posted on: Sat, 07/08/2006 - 10:11am
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Well...I know I'm not a child or have a PA child...but I really found the value of a blood test last year.
Long story short - anaph. at age 2 to peanut...avoidant living since...no reactions for over 15 years now. I never had a SPT or bloodwork when I was little. SPT would have thrown me into anaph. and blood tests did not exist.
So...last year, I decided to get a RAST test for peanuts and all kinds of tree nuts, true nuts, and seeds. Why? Well...it had been so long since I had a reaction, maybe just maybe, I outgrew the allergy. Right?
So...Class V RAST to peanuts came back. My allergist thought I was crazy b/c I cheered. Why? It was so justifying to how I was living peanut-free, putting up fusses with friends and restaurants,missing out on certain foods/restaurants/etc. Sounds really odd, but I felt so justified in my PA-insanity.
[img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] So, maybe for some who haven't had a reaction in more than a few years (like 10 years) it's a nice reminder that "hey - you are still allergic, you still have to be careful just like when you were 4 years old"
Adrienne [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
------------------
30-something survivor of severe peanut/tree nut allergy

Posted on: Sat, 07/08/2006 - 12:47pm
Gail W's picture
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Thank you to everyone for sharing your thoughts.
Corvallis Mom: thank goodness for Factory Outlet Malls!
Adrienne, you make a good point about confirming the fact that one's allergy still exists if the possibility of outgrowing is a question. Though Mariah hasn't had a anaphylactic reaction in years, she has a strong history of contact reactions (one induced in a clinical challenge) indicating that her peanut allergy still certainly exists. So, unfortunately, we know she has not outgrown her peanut allergy.
Quote:Originally posted by Gwen 5:
[b]I think if Mariah is ONLY allergic to Peanuts it would be a good idea because if her numbers go down or even up- with all the new trials going on it may be interesting to know a more recent number to see if you may do one of these studies or even treatments when they get approved.[/b]
That's a good point too, even though I'm not so sure any treatments will be available in the very near future. But a study is a very real possibility. (Mariah is allergic to several tree nuts in addition to peanut, but your point still holds IMO.) I guess I would want to see if there was a study that was logistically/practically a real possibility, then do whatever testing would be required to qualify.
Our insurance covers most of the expense, so we're fortunate that cost isn't a factor in the equation for us.
I like to see numbers too. I want to be sure that I'm not simply serving my own curiosity. My allergist is genuinely interested in Mariah and he is also very interested in seeing some 'new' numbers. I guess I'm trying to figure out who it is that I'm actually serving by having her retested. My allergist? and if so, [i]is that okay. . . .[/i]
Still pondering. . .

Posted on: Sat, 07/08/2006 - 1:41pm
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Gail,
Just a thought--- does the school ask for her test results? If they do come back lower than they were, would that cause any confusion with the school about how severe her allergy is?

Posted on: Sat, 07/08/2006 - 9:55pm
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If we had just one allergy, for OUR situation, we wouldnt go back yearly, and just 'accept' PA and move on.
We're not there, and are TRYING to get SOMETHING added to the diet, so we continue, and insurance covers most of it as well, as PP said.
Why we test peanut/nuts? Good Q. Data happy? Maybe. We're testing everything else, so whats 'a few more', I guess.
Regardless of results, for nuts/shellfishies, we'd probably avoid for a while any how [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
Jason
------------------
[b]* Obsessed * [/b]

Posted on: Sun, 07/09/2006 - 12:12am
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I didn`t think a lower cap rast would make a difference, but it did. Dd has been getting tested for milk yearly in hopes of outgrowing, so the allergist has them do peanut while they are drawing the blood. I really had no expectations about the peanut. She is 11 and I assume will never outgrow it. However, last time her peanut fell from 34 to 15, and I must say although she is still allergic, my stress level is much lower now that her cap rast is lower. Dd has been asking for the cap rast to milk because she wants to eat real pizza, so there is no bribe necessary. The chance of getting to eat 10 times as many foods is reward enough for her. In fact, after the last one, the allergist said repeat in 6 to 12 months (to see if she can get a milk challenge, but peanut will be done as well), and dd already said she wants it repeated in six months. Dd was also very excited to see her peanut number fall, and I think she is less anxious about her pa now that it has fallen. Keep in mind, there are only two labs in the country that are accurate with cap rast. IBT in Kansas is one of them, which is where dd`s blood is always sent. About the skin test, it is an exposure, so the allergist would not do one and I would not allow one. Dd was sensitized to egg by a negative skin test, had an anaphylactic reaction the first time she ate it, and eventually outgrew it at age 9.

Posted on: Sun, 07/09/2006 - 5:36am
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Hi Gail!!
When Drew's CAP Rast results came back last year, peanut came back ">100". The exact number could have been 101 or 357 - we don't know. Therefore, it will be difficult for us to determine whether his numbers go up or down. (It could go from 300 to 200, but we wouldn't know KWIM?) Does your allergist use a test that will give you an exact number? For me personally, I may be more likely to retest if I had a definite number.

Posted on: Sun, 07/09/2006 - 6:55am
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Hi Gail,
Doesn't it kill you when your kids know how to accessorize better than you do? [img]http://uumor.pair.com/nutalle2/peanutallergy/biggrin.gif[/img]
We retested DS last year. It had been 6 years since his last CAP-RAST, and it had been almost 2 years since he had a reaction. Moreover, we were curious about sesame since it had been quite a bit longer since he had reacted to that. So we went ahead, with DS making all sorts of plans about what he was going to eat when he got the results he was hoping for. I warned him not to get his hopes up, but failed to realize how I had gotten [i]mine[/i] up, LOL.
When we got the results his allergist sounded almost as disappointed as I was. His numbers had all gone [i]up[/i], despite strict avoidance. DS took it totally in stride, just shrugging it off with an, "Oh, well" while I made a complete idiot of myself crying on the phone with his doctor. [img]http://uumor.pair.com/nutalle2/peanutallergy/rolleyes.gif[/img]
Honestly, if it hadn't been for the sesame we probably wouldn't have done it, but as long as you're testing for one, you might as well do the whole shebang. Also, he was starting at a new school in September and I wanted to make sure all documentation was current.
Needless to say, we won't be testing again for awhile, LOL.
Amy

Posted on: Sun, 07/09/2006 - 12:04pm
Gail W's picture
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Thanks to all who have responded. I find this topic interesting, and have read all your thoughts with great interest.
Hi Jenna. How's it going? No, I don't think our school would be confused by any new results. That's a good consideration, but thankfully my school now seems to 'get it'. So I don't feel there would be a downside by obtaining results if her numbers indeed were to go down. And I can count on my allergist to help correct them if I'm wrong and the school misinterpreted the new data. Good thought.
Carefulmom, I had remembered your posts about using a reputable lab. We're in St. Louis, so IBT in Kansas City is also in Missouri. I will definitely ask my allergist if we can use this lab. I appreciate you bringing this up here again. Thank you. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
Drew's mom. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] Howdy! How are you??? Yes, the scale/numbers. The results we received in 1999 were on a 0 to 100 scale. And like yours ours read ">100" which was class 6+. I went to IBT's website here: [url="http://search.ibtreflab.com/cgi-bin/search.cgi?query=CAP+Rast"]http://search.ibtreflab.com/cgi-bin/search.cgi?query=CAP+Rast[/url] . . just click on the download to get an article with IBT's RAST scale:
[i]Class: . . . . . . . . . .IgE (kU/L):. . . . . . . . . .Comment:
0 . . . . . . . . . . . . . . . . <0.10. . . . . . . . . . . .Negative
0/1. . . . . . .. . . . . . . . 0.10-0.34. . . . . . . . .Equivocal
1. . . . . . . . . . . . . . . . .0.35-0.69 . . . . . . . .Low Positive
2. . . . . . . . . . . . . . .. . 0.70-3.4 . . . . . Moderate Positive
3 . . . . . . . . . . . . . . . . 3.5- 17.4 . . . . . . .High Positive
4 . . . . . . . . . . . . . . . . 17.5-49.9 . . . . . . .Very High Pos.
5 . . . . . . . . . . . . . . . . 50.0-99.9 . . . . . . .Very High Pos.
6 . . . . . . . . . . . . . . . . . .>100 . . . . . . . Very High Pos. [/i]
So, indeed, Mariah could get the same result of ">100" and we wouldn't know if that means her numbers went UP or DOWN. *sigh* So you're exactly right, Drew's mom~ we wouldn't know if her numbers went UP from say 200 to 300 or DOWN from 300 to 200. With higher numbers, the scale seems so much less sensitive. Anything above 17.5 is considered a "very high positive".
Amy, LOL. I'm clearly and admittedly "fashion challenged". I'm glad to have a daughter who likes to shop with (a.k.a. [i]for[/i]) me. It was actually MommaBear who suggested a Coach bag here last year as an incentive for Mariah to carry her epi at school. Mariah remembered that idea. . . [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] The Coach bag is purchased, but not in her possession yet. [img]http://uumor.pair.com/nutalle2/peanutallergy/cool.gif[/img]
I guess I'm coming to the conclusion that I don't see much value in retesting. I know she's contact sensitive and I doubt a number would be low enough to change our behaviors or lessen my stress. But who knows. I probably will have her retested anyway since our allergist suggests it each annual visit. This year, with my bribe in place, Mariah doesn't object to the testing.
Thanks for all your thoughts everyone. I continue to welcome them, so keep them coming. Our appointment isn't til August, and I'll post an update with results.
Edited to try to fix the chart.
[This message has been edited by Gail W (edited July 09, 2006).]

Posted on: Sun, 07/09/2006 - 2:41pm
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Quote:Originally posted by Jenna:
[b]Just a thought--- does the school ask for her test results? If they do come back lower than they were, would that cause any confusion with the school about how severe her allergy is?[/b]
We have been wrestling with the re-test issue ourselves & TX doc **may** request a re-test before he will write letter to school in support of 504 . . . but in any event we, personally, would never allow school to see any test numbers. We want doc to be the informed interpreter & to only give school his expert diagnosis & requirement of strict avoidance of peanut & nuts. Don't know quite how this will all play out, but we'll know soon enough as school starts August 7th for us in Georgia.
FWIW, DS was Rast tested 2 years ago, age 5 & was a class 3. This was only Rast ever done. His earlier SPTs (at age 1) were extreme in reaction, so we've never repeated any SPT. Not sure what we would do or change if new Rast came back below class 3. I believe the class 3 was NOT a class 6 because we'd been so successful at avoiding exposure.
Hope I'm making sense.
~Elizabeth

Posted on: Mon, 07/10/2006 - 2:24am
Gail W's picture
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Okay. The 1999 CAP RAST was drawn and ran at St. Louis Children's Hospital, so this morning I called and spoke with them. I got some interesting information that I'm excited about.
Regarding this:
Quote:Originally posted by Gail W:
[b]So, indeed, Mariah could get the same result of ">100" and we wouldn't know if that means her numbers went UP or DOWN. *sigh* [/b]
The technician I spoke with said that there is an option by which the can obtain more specific results for scores >100. The lab can run "dilutions". Has anyone heard of this? Corvallis Mom? Carefulmom? So, for example, when they dilute a sample in half and get a score of 75, then the score over 100 would be 150. Does that make sense? I understand from her that she can run multiple dilutions to obtain a more accurate reading over 100.

Posted on: Mon, 07/10/2006 - 2:42am
Corvallis Mom's picture
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Yes-- this makes perfect sense to me.
Dilutions [i]do[/i] have certain limitations, however. The fact is that the sample will not have the same "matrix" if it is diluted 1:10 as it would if run normally. So this does/can introduce additional error, and my guess is that running samples this way is outside the normal operating procedure of most clinical labs as well.
Another thing-- they would have to start over from the original blood sample or the reagents used for would be diluted as well... meaning that the standards and sample wouldn't be otherwise identical and therefore you couldn't correlate the measurement to a calibration curve. This is pretty important with a CAP-RAST since these are now done with fluorescence measurements rather than the older radioactivity method. Fluorescence calibrations curves aren't linear (they're asymptotic or parabolic instead), so you can't just use a simple multiplier for results.
It is possible, certainly, but probably a PITB to start over again when the sample is out of range. High throughput labs probably just won't do it at all... and insurance may view it as an "additional" test.
(shrug) So I am pretty sure that this is the reason it isn't routinely done. After all, how many of us here have >100 values for peanut and a host of other allergens as well?
But if the technicians are willing to do so, why not? [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
[This message has been edited by Corvallis Mom (edited July 10, 2006).]

Posted on: Mon, 07/10/2006 - 3:03am
Gail W's picture
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THANK YOU Corvallis Mom! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
I'm trying hard to understand this, and hope you'll bear with me.
[b]"Another thing-- they would have to start over from the original blood sample or the reagents used for would be diluted as well... meaning that the standards and sample wouldn't be otherwise identical and therefore you couldn't correlate the measurement to a calibration curve."[/b]
Do you mean the original sample from 1999?

Posted on: Mon, 07/10/2006 - 5:45am
Corvallis Mom's picture
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No-- just that the blood sample that you provided them is what they must dilute (prior to running the analysis) for best accuracy, and NOT the sample that they measured to be off-scale. If they just dilute the derivitized material, the error in the measurement will be substantial (maybe as much as 25%-35%, depending upon how much dilution is needed to bring it onto the scale of calibration).
[This message has been edited by Corvallis Mom (edited July 10, 2006).]

Posted on: Mon, 07/10/2006 - 7:07am
Gail W's picture
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Gotcha. Thanks. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Posted on: Tue, 07/11/2006 - 11:01am
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Hi Gail, sorry for the delay. Dd is away at sleep away camp and I have been out enjoying myself. I really don`t know about whether it is possible to accurately determine the number for a cap rast when it is over 100 (like is it 150, 175, etc.). What Corvallis Mom wrote makes sense. You might want to call IBT and see if they can do a cap rast to get an exact number if it is over 100. If they say no, then you could ask why. Maybe there is a reason. If you want to call them, their phone number is (800)637-0370.

Posted on: Thu, 07/13/2006 - 4:10am
Gail W's picture
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Hi Carefulmom [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
Thank you. I loved your suggestion and called IBT. I didn't get much info, except that my allergist should call the head of the lab (Dr. Halsey) to discuss dilutions and whether or not IBT can provide this type of specificity. So that's what I'll do . . . .ask our allergist to call and make any necessary pre-arrangements.
Thanks again. . .

Posted on: Thu, 07/13/2006 - 1:07pm
NCMom's picture
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When our son entered Kindergarten this past fall, we decided to do a retest to see if his scores had dropped. He had an anaphylactic reaction at 2 1/2 and his peanut level was 17 then. When we retested at 5 1/2, his peanut level is now 81 - I was so upset. I truly thought they would drop because we were so vigilant. Drawing blood from this child you'd think they were chopping his arm off. I vowed never to test again unless our allergist had a major reason for us to.
My son just had his tonsils removed and they have to draw blood before to test for several things. We didn't tell our son and the ENT put some cream on his arm. My son didn't even ask why! When we got to the lab, we did all the prelim. stuff and didn't tell him until a few minutes before. We had to retrieve him from under the table. Five of us held onto various parts of him to hold him still.
So I don't plan to repeat that test unless he wants to someday later in life...

Posted on: Fri, 07/14/2006 - 12:59am
Gail W's picture
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Quote:Originally posted by NCMom:
[b]Drawing blood from this child you'd think they were chopping his arm off. [/b]
Exactly. Ditto here. It was traumatic for Mariah. . . silly as that may sound, it was an enormous deal to her. So we've tried to work with that. . . and Mariah is now finally open to it (given the suitable bribe).
This morning I got a nice e-mail response from our allergist. It seems that my questions may have changed his mind about retesting:
[i]"I have thought about the issue of a CAP RAST for Mariah. I am not sure that it would be more than academic interest. . . ."[/i]
Wouldn't you know it. Just when Mariah is ready. (What will I do with that Coach bag now?) Maybe 'academic interest' . . .curiosity . . .is a valid reason. Maybe not. Now I'm even less certain about what to do.

Posted on: Fri, 07/14/2006 - 1:36am
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If it were me, I would ask Mariah what she wants to do. The allergist doesn`t seem to think it is necessary any more, so it really depends on whether Mariah wants to move forward with it and get the reward or skip it. She is a year older than my dd---I would leave it up to her in that setting, since the allergist seems to think it is not that necessary.

Posted on: Mon, 08/21/2006 - 4:17am
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Just a quick update on this. (I've been without computer for quite a while.)
This is exactly what we did:
Quote:Originally posted by Carefulmom:
[b]If it were me, I would ask Mariah what she wants to do. The allergist doesn`t seem to think it is necessary any more, so it really depends on whether Mariah wants to move forward with it and get the reward or skip it. She is a year older than my dd---I would leave it up to her in that setting, since the allergist seems to think it is not that necessary.[/b]
At our appointment, I asked the allergist (again, for Mariah's ears) what he thought about repeating the CAP Rast. He said that it was basically for "curiousity" . . . [i]"So we'll do it when Mariah is curious. You'll let me know when you're curious and ready, right Mariah?" [/i] So, he put it right back in Mariah's hands. Gotta love an allergist who knows how to empower your child. He's the parent of a girl (now 25) with PA/TNA. . . and his hoaned parenting skills have benefitted me/Mariah. [img]http://uumor.pair.com/nutalle2/peanutallergy/biggrin.gif[/img]
But she still got her beloved Coach bag to carry her epi-pen today, the first day of school. [img]http://uumor.pair.com/nutalle2/peanutallergy/biggrin.gif[/img]
So, no CAP RAST, and a happy ending for all.
Thanks for all your help and support everyone.
Gail

Posted on: Mon, 08/21/2006 - 5:06am
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Caitlin will want Coach bags... I can feel it.
Jason
------------------
[b]* Obsessed * [/b]

Posted on: Mon, 08/21/2006 - 6:46am
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Our son is now 10 and hasn't been tested in over 5 years. He had a negative CAP-RAST but failed the food challenge. He has since had one more reaction also. Ever since then we just don't trust tests. I just discussed this with dh and he said maybe when son turns 16. I guess I am more curious than he is.

Posted on: Tue, 08/22/2006 - 4:18pm
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Hi Gail W,
Late to the party (I haven't been here much until a few days ago), but this question was on our minds as well.
I'm a numbers guy as well, and it had been 5 years since last CAP RAST (he's now 8 years old). We did re-test DS a few weeks ago on peanut and all major tree nuts, plus some other items (like soy) that have been positive in the past. DS's CAP RAST is still Class 6 (>100), so we don't know if it went up/down at the high end of the range. But we do know that he's still Class 6, and his immune system should be more "stable" (if you will) than when he was 3. Total IGE was a bit higher if I recall as well.
Oh well...no changes in behavior in how we live life daily, but it does satisfy some curiousity. Also, handy to have more current results if there is ever a study that is interesting to pursue.

Posted on: Wed, 08/23/2006 - 12:25am
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Hi Nutternomore [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] I was thinking more about this today.
Originally posted by Nutternomore:
Quote:[b] but it does satisfy some curiousity. [/b]
Can you share more about this? What did it satisfy? I'm trying to understand my own curiosity.
I realized something today, and I wonder if you or anyone can relate. . .
For me, it's more/different than curiosity alone. There is something that movitated my 'curiosity' that I finally figured out for myself. It's the whole crazy uncertainty of this allergy and feeling the need for 'control'. There are so many, [i]too many[/i], 'unknowns' . . . and even after 12 years I still feel like I'm sometimes trying to slay an invisible monster. KWIM?
So I find myself wanting [i]answers[/i]. It is comforting to me to have something, [i]anything[/i] concrete. The CAP Rast number is really the only concrete 'data' I am able to obtain. A number, the specific and measurable number, appeals to me because it is exact, known, finite. I like the idea of having information about Mariah's PA that is exact and specific to [i]her[/i].
Silly, I guess. Because for her (> 100 and still having contact reactions), it really doesn't tell us much of anything useful that we don't already know. . . I doesn't change anything or give me anwers or empower me in any way. I still find myself needing answers and wanting control.
For me, I realized that I'm still having trouble accepting the unknown nature of PA. Anyone else feel this way?
[This message has been edited by Gail W (edited August 23, 2006).]

Posted on: Wed, 08/23/2006 - 12:47am
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Quote:Originally posted by Gail W:
[b]Hi Nutternomore [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] I was thinking more about this today.
Originally posted by Nutternomore:
Can you share more about this? What did it satisfy? I'm trying to understand my own curiosity.
I realized something today, and I wonder if you or anyone can relate. . .
For me, it's more/different than curiosity alone. There is something that movitated my 'curiosity' that I finally figured out for myself. It's the whole crazy uncertainty of this allergy and feeling the need for 'control'. There are so many, [i]too many[/i], 'unknowns' . . . and even after 12 years I still feel like I'm sometimes trying to slay an invisible monster. KWIM?
So I find myself wanting [i]answers[/i]. It is comforting to me to have something, [i]anything[/i] concrete. The CAP Rast number is really the only concrete 'data' I am able to obtain. A number, the specific and measurable number, appeals to me because it is exact, known, finite. I like the idea of having information about Mariah's PA that is exact and specific to [i]her[/i].
Silly, I guess. Because for her (> 100 and still having contact reactions), it really doesn't tell us much of anything useful that we don't already know. . . I doesn't change anything or give me anwers or empower me in any way. I still find myself needing answers and wanting control.
For me, I realized that I'm still having trouble accepting the unknown nature of PA. Anyone else feel this way?
[This message has been edited by Gail W (edited August 23, 2006).][/b]
Tremendous insight, Gail! Sitting here reading this, I realized that I have the same feeling...

Posted on: Wed, 08/23/2006 - 12:52am
Corvallis Mom's picture
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Ditto. But what a relief to know that it doesn't mean I'm not "making progress" in how I deal with DD's PA.
(Glad to know she is enjoying her Coach bag anyway. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] )

Posted on: Wed, 08/23/2006 - 1:03am
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Quote:Originally posted by Gail W:
[b]Can you share more about this? What did it satisfy? I'm trying to understand my own curiosity.
I realized something today, and I wonder if you or anyone can relate. . .
For me, it's more/different than curiosity alone. There is something that movitated my 'curiosity' that I finally figured out for myself. It's the whole crazy uncertainty of this allergy and feeling the need for 'control'. There are so many, too many, 'unknowns' . . . and even after 12 years I still feel like I'm sometimes trying to slay an invisible monster. KWIM?
So I find myself wanting answers. It is comforting to me to have something, anything concrete. The CAP Rast number is really the only concrete 'data' I am able to obtain. A number, the specific and measurable number, appeals to me because it is exact, known, finite. I like the idea of having information about Mariah's PA that is exact and specific to her.
Silly, I guess. Because for her (> 100 and still having contact reactions), it really doesn't tell us much of anything useful that we don't already know. . . I doesn't change anything or give me anwers or empower me in any way. I still find myself needing answers and wanting control.
For me, I realized that I'm still having trouble accepting the unknown nature of PA. Anyone else feel this way?
[/b]
You mean like why I demand an IEP over a 504? [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img]
The need for concrete data, satisfying my morbid curiosity, or even just [i]letting all that go[/i], is, at every facet: [i]adapt and overcome[/i]. Control, if you will. Even when exhibited as [i]wanton abandon[/i] and disinterest in "the numbers". I know what I need to know. I mean, would you feel you mortally wounded "the monster" if the numbers were 99? 50? 5? Or would you just wonder if the monster was slumbering somewhere in a cave?
Is it set in stone what those numbers mean?
There's a point where I separate my "research interest" from "actual reality". The work of living. I have to, or I find myself unable to function.
I mean, I could really immerse myself in something like this. Get absorbed...
But, you know, no advice, just what works for me. Sometimes. Don't really have an answer.
speaking of the work of living. my kitchen is a mess. total wreck. first week of school not a smooth sailing day yet.

Posted on: Wed, 08/23/2006 - 10:13am
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[i] Pssst. Hi Gail! I've been worried about you since that horrible storm hit a month or so ago. I was unsuccessful in contacting you. I assume all is well. [/i]
Quote:Originally posted by Gail W:
[b]I realized something today, and I wonder if you or anyone can relate. . .
For me, it's more/different than curiosity alone. There is something that movitated my 'curiosity' that I finally figured out for myself. It's the whole crazy uncertainty of this allergy and feeling the need for 'control'. There are so many, [i]too many[/i], 'unknowns' . . . and even after 12 years I still feel like I'm sometimes trying to slay an invisible monster. KWIM?
So I find myself wanting [i]answers[/i]. It is comforting to me to have something, [i]anything[/i] concrete. The CAP Rast number is really the only concrete 'data' I am able to obtain. A number, the specific and measurable number, appeals to me because it is exact, known, finite. I like the idea of having information about Mariah's PA that is exact and specific to [i]her[/i].
[/b]
I think there are a lot of us that feel this same need and frustration...you are so good at putting your feelings/emotions into words.
Glad you are back! [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img] And I'm glad Mariah had a Coach bag to carry on her first day of school! [img]http://uumor.pair.com/nutalle2/peanutallergy/cool.gif[/img] Our kiddos have to put up with so much, it is nice to be able to spoil them a little.

Posted on: Wed, 08/23/2006 - 2:13pm
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Quote:Originally posted by Nutternomore:
[b]
Tremendous insight, Gail! Sitting here reading this, I realized that I have the same feeling... [/b]
Gail,
Let me add that I think it also satisfies an emotional need on my part that I've left no stone unturned in my quest for understanding. Again, intellectually, I realize that it won't change our daily practices, but nevertheless, I'm hopeful that perhaps someday, medical science might progress to the point where the data could somehow be useful...
[This message has been edited by Nutternomore (edited August 24, 2006).]

Posted on: Mon, 08/28/2006 - 12:04am
Gail W's picture
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I certainly understand the emotional component. For me personally, repeating wouldn't be satisfying emotionally either. I think that's what bothered me. . . there just wasn't anything satisfying. But that's just me. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
Update: I used "Ask The Allergist" on the Asthma & Allergy Foundation's website, [url="http://www.aafa.org/ask_allergist_online.cfm"]http://www.aafa.org/ask_allergist_online.cfm[/url] My e-mail has been down for quite some time. I just recently got it back and found their response. My questions are in bold and the allergist's answers are in italic.
While I just read this today and our process has been over for a month, I still found his response very informative. This is the first time I've used "Ask the Allergist". Something I'll keep in mind for future questions. . .
______________________________________________________
[b]I am the mother of a 12 year old with asthma and food allergies (several tree nuts and peanut). My daughter has had one CAP RAST level in 1999 for peanut when she was age 5 at St. Louis Children's Hospital: 6+ >100ku/l. We're considering repeating a CAP RAST for peanut and I have several questions.
1. Does it matter what lab runs the test? Can different labs produce different results? I've heard the IBT (Kansas) is very reliable. Is any data available comparing laboratory reliability for CAP RAST testing?[/b]
[i]There can be some lab variability. IBT is a great lab but I am sure Washington U

Posted on: Sat, 07/08/2006 - 2:35am
Corvallis Mom's picture
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We had RAST done about four times before DD was five... but really, since the first one (pn was 18? 22? this was right after anaphylaxis), we haven't seen the pn number do anything. It stays at >100-- though we had one RAST at about 4 where it went down to 80-something.
We haven't had another CAP RAST in about three years. NO need. We still see absolutely [i]crazy[/i] sensitivity to aerosol and contact, so we already know what it would say for pn... and frankly, we don't really want to know what our allergist's skin testing has done to the egg numbers... though maybe we should know. Could be that one is >100 now too. (sigh) She now has aerosol sensitivity to that one too.
The three we [i]are[/i] curious about actually are some that we had tested many years ago and not since... as we didn't feel (at the time) as though they were clinically relevant. Milk, sesame, and tree nuts-- pistachio in particular, since that one wasn't ever done.
I guess I'd like to know what the pistachio number is to guage just how severe a skin test to pn might be. Our normally sanguine allergist was frankly alarmed by her pistachio skin test. I also would like to get a "second" opinion on milk, since there have been times in the past year when she has reacted with hives and eczema and oral itching-- even to traces. But SPT was negative. Go figure. We avoided anyway until she seemed to tolerate it better (about a month ago now... keeping our fingers crossed...).
Her sesame numbers at 3 yo suggested she was class 2. She has continued to eat things which contain sesame periodically without any apparent ill affect. But it would be nice to know if the numbers are climbing.
We may have to bribe DD with Build-A-Bear for another blood draw. But she might like it better than the last round of skin tests. A Faustian bargain indeed. [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img] But it is probably time. Besides, maybe we can track environmentals as she gets into her second year of immunotherapy.
Ahhh... our rationale.
We were pretty data happy at first. (Comes with the occupations... [img]http://uumor.pair.com/nutalle2/peanutallergy/redface.gif[/img] )
Then we realized that it was just disappointing to us and a bit hard on our allergist as well. (I think he felt like a failure after the last one in which the egg number climbed into class 6 territory...)
And so we decided that we will no longer test unless we know what we will "do" with the results. Results that show pn going from >100 to 80 aren't going to changes a thing...KWIM? Now, I still think it is a good idea to have reasonably fresh test results for schools and other skeptics. So we will probably do another blood draw and RAST this year. DD is 7.
[This message has been edited by Corvallis Mom (edited July 08, 2006).]

Posted on: Sat, 07/08/2006 - 3:06am
Gail W's picture
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Quote:Originally posted by Corvallis Mom:
[b]We may have to bribe DD with Build-A-Bear for another blood draw. [/b]
Ah yes . . .[i]the bribe[/i]. Mariah has declared a Coach purse as her reward if we decide to go ahead with the CAP rast. She's determined that a Coach bag is [i]practical[/i] because she can carry her epi-pen and cell phone in it. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
Our allergist has been so supportive and has taken a special interest in Mariah. [i]He[/i] is the one who is curious. My DH sees zero practical use to retest (and since Mariah has strong objections sees it as negative), and I'm in the middle. Just trying to figure out what a new level would give us. . . aside from satisfying anyone's curiosity.
Edited to add: do you think we would gain any knowledge if her numbers went down? What would that tell us?
[This message has been edited by Gail W (edited July 08, 2006).]

Posted on: Sat, 07/08/2006 - 4:30am
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My 5 year old PA & DA son has been skin tested once and had the blood test twice (once at 3.5 years and once at 5 yr). While I know that the results from the blood test (and the skin test) can be misleading, those results are the only ones I can get without feeding him what he is allergic to. His numbers went down on the second blood test, so my husband and I took it to mean that we were doing the right thing in avoiding those foods, even it is SUCH a pain in the butt.
Now, I have to say that he is a class 2. I don't know if my thinking on testing would be different if he tested off the charts, as so many do. But since his numbers are so low (relatively), I like to watch them, and hopefully at some point they can indicate that a second skin test is called for.
------------------
[i][b]Allergy Eliminator [/b][/i]

Posted on: Sat, 07/08/2006 - 4:49am
Jenna's picture
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Gail,
We have asked ourselves this very same question over time. Would it really do any good to retest when we know how incredibly allergic he is? When he was first diagnosed, our doctor actually told us not to bother to keep retesting him. Our new physician (due to our other's retirement) does like to retest. We haven't - simply because we don't know what we'd do with the results once we got them - what we would do different - and the money. We also feel that the numbers could be misleading in that he still reacts no matter what the numbers. Is there anyone that has gotten retested, the numbers went down, and it made a difference in what you do?

Posted on: Sat, 07/08/2006 - 5:30am
Corvallis Mom's picture
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Quote:Originally posted by Gail W:
[b] Ah yes . . .[i]the bribe[/i].
...a Coach purse as her reward ...[/b]
[img]http://uumor.pair.com/nutalle2/peanutallergy/eek.gif[/img] Maybe we'd better do this now, while Build-A-Bear will still do.
(I can see my "Princess" stopping at nothing short of a one-of-a-kind, designer original...)
[img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
As an accessory hound myself, though, I can see her point. [i] Verrrrry, uh- practical.[/i]
She wouldn't be likely to leave THAT lying around, too-- which is a bonus, I suppose.

Posted on: Sat, 07/08/2006 - 8:38am
iansmom's picture
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I've wrestled with this issue, too. Ian has never had a CapRAST. He's never been tested for peanut since his original SPT 5 years ago. I was leaning toward testing until he had a reaction in May (his first reaction in 4 years, and to possible traces on a lunch table that was supposed to be nut-free). That reaction confirmed for me that he is still quite sensitive, and we won't be any more lenient in how we handle it than we are now. Instead, we'll be tightening things up at school.
So what is the benefit to testing in Ian's case? Probably none. He won't like it, and we don't need the additional expense. He already puts up with allergy shots, and one year into it they seem to be working for him. Testing for those will probably confirm the results, but I don't feel we need it just for the environmentals.
Maybe we'll do a CapRAST in a few years if he manages to stay reaction-free. Then again, maybe we won't.
*shrug*

Posted on: Sat, 07/08/2006 - 9:35am
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Gail-
I just had my dd, age 8 1/2 retested on Friday.
We seem to do it every year or 2- I wanted to do it to see what her numbers are doing.
I know we will not change anything but I am curious to see what they will do-her numbers.
Now that being said, my dd is also allergic to all tree nuts and sesame- I would just like to see what is going on in general.
Your point is a good one though- WHY???
I think if Mariah is ONLY allergic to Peanuts it would be a good idea because if her numbers go down or even up- with all the new trials going on it may be interesting to know a more recent number to see if you may do one of these studies or even treatments when they get approved.
My dd did not really object to the bloodwork- it is fast and simple- a frozen yogurt after was good enough for her- thankdfully- maybe in a few years that will change!
I like to see numbers, maybe that is my problem!

Posted on: Sat, 07/08/2006 - 10:11am
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Well...I know I'm not a child or have a PA child...but I really found the value of a blood test last year.
Long story short - anaph. at age 2 to peanut...avoidant living since...no reactions for over 15 years now. I never had a SPT or bloodwork when I was little. SPT would have thrown me into anaph. and blood tests did not exist.
So...last year, I decided to get a RAST test for peanuts and all kinds of tree nuts, true nuts, and seeds. Why? Well...it had been so long since I had a reaction, maybe just maybe, I outgrew the allergy. Right?
So...Class V RAST to peanuts came back. My allergist thought I was crazy b/c I cheered. Why? It was so justifying to how I was living peanut-free, putting up fusses with friends and restaurants,missing out on certain foods/restaurants/etc. Sounds really odd, but I felt so justified in my PA-insanity.
[img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] So, maybe for some who haven't had a reaction in more than a few years (like 10 years) it's a nice reminder that "hey - you are still allergic, you still have to be careful just like when you were 4 years old"
Adrienne [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
------------------
30-something survivor of severe peanut/tree nut allergy

Posted on: Sat, 07/08/2006 - 12:47pm
Gail W's picture
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Thank you to everyone for sharing your thoughts.
Corvallis Mom: thank goodness for Factory Outlet Malls!
Adrienne, you make a good point about confirming the fact that one's allergy still exists if the possibility of outgrowing is a question. Though Mariah hasn't had a anaphylactic reaction in years, she has a strong history of contact reactions (one induced in a clinical challenge) indicating that her peanut allergy still certainly exists. So, unfortunately, we know she has not outgrown her peanut allergy.
Quote:Originally posted by Gwen 5:
[b]I think if Mariah is ONLY allergic to Peanuts it would be a good idea because if her numbers go down or even up- with all the new trials going on it may be interesting to know a more recent number to see if you may do one of these studies or even treatments when they get approved.[/b]
That's a good point too, even though I'm not so sure any treatments will be available in the very near future. But a study is a very real possibility. (Mariah is allergic to several tree nuts in addition to peanut, but your point still holds IMO.) I guess I would want to see if there was a study that was logistically/practically a real possibility, then do whatever testing would be required to qualify.
Our insurance covers most of the expense, so we're fortunate that cost isn't a factor in the equation for us.
I like to see numbers too. I want to be sure that I'm not simply serving my own curiosity. My allergist is genuinely interested in Mariah and he is also very interested in seeing some 'new' numbers. I guess I'm trying to figure out who it is that I'm actually serving by having her retested. My allergist? and if so, [i]is that okay. . . .[/i]
Still pondering. . .

Posted on: Sat, 07/08/2006 - 1:41pm
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Gail,
Just a thought--- does the school ask for her test results? If they do come back lower than they were, would that cause any confusion with the school about how severe her allergy is?

Posted on: Sat, 07/08/2006 - 9:55pm
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If we had just one allergy, for OUR situation, we wouldnt go back yearly, and just 'accept' PA and move on.
We're not there, and are TRYING to get SOMETHING added to the diet, so we continue, and insurance covers most of it as well, as PP said.
Why we test peanut/nuts? Good Q. Data happy? Maybe. We're testing everything else, so whats 'a few more', I guess.
Regardless of results, for nuts/shellfishies, we'd probably avoid for a while any how [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
Jason
------------------
[b]* Obsessed * [/b]

Posted on: Sun, 07/09/2006 - 12:12am
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I didn`t think a lower cap rast would make a difference, but it did. Dd has been getting tested for milk yearly in hopes of outgrowing, so the allergist has them do peanut while they are drawing the blood. I really had no expectations about the peanut. She is 11 and I assume will never outgrow it. However, last time her peanut fell from 34 to 15, and I must say although she is still allergic, my stress level is much lower now that her cap rast is lower. Dd has been asking for the cap rast to milk because she wants to eat real pizza, so there is no bribe necessary. The chance of getting to eat 10 times as many foods is reward enough for her. In fact, after the last one, the allergist said repeat in 6 to 12 months (to see if she can get a milk challenge, but peanut will be done as well), and dd already said she wants it repeated in six months. Dd was also very excited to see her peanut number fall, and I think she is less anxious about her pa now that it has fallen. Keep in mind, there are only two labs in the country that are accurate with cap rast. IBT in Kansas is one of them, which is where dd`s blood is always sent. About the skin test, it is an exposure, so the allergist would not do one and I would not allow one. Dd was sensitized to egg by a negative skin test, had an anaphylactic reaction the first time she ate it, and eventually outgrew it at age 9.

Posted on: Sun, 07/09/2006 - 5:36am
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Hi Gail!!
When Drew's CAP Rast results came back last year, peanut came back ">100". The exact number could have been 101 or 357 - we don't know. Therefore, it will be difficult for us to determine whether his numbers go up or down. (It could go from 300 to 200, but we wouldn't know KWIM?) Does your allergist use a test that will give you an exact number? For me personally, I may be more likely to retest if I had a definite number.

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