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
Joined: 12/06/2001 - 09:00

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
Joined: 05/22/2001 - 09:00

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
Joined: 12/06/2001 - 09:00

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
Darkmage's picture
Joined: 10/01/2004 - 09:00

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
Joined: 07/09/2000 - 09:00

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
Joined: 05/22/2001 - 09:00

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...)
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
Joined: 07/26/2001 - 09:00

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.

Posted on: Sat, 07/08/2006 - 9:35am
Gwen 5's picture
Joined: 01/24/2003 - 09:00

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
ajgauthier's picture
Joined: 04/13/2005 - 09:00

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
Joined: 12/06/2001 - 09:00

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
Jenna's picture
Joined: 07/09/2000 - 09:00

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?


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