In light of Mfamom's son passing PN challenge . . . and others along the way . . .
I find myself wondering when it is appropriate to demand that doc challenge the child/patient?
And what does the child/teen/patient have to say in the matter?
And what sort of doc do you try to switch to if current doc will not entertain?
And what are the test parameters that empower you or LTFA-person to entertain such a move?
RAST should be what?
SPT should be what?
uKnow should be what?
OTHER test should be what?
HISTORY of reax should be what?
WHAT should be what?
I'm wondering.
I am SURE that I'm not alone in the wondering.
Ajas,
I don't think that you can demand a challenge. You can ask, and ask again, and plead, but not demand. You can get a second opinion.
In the end though, the docs can refuse. I know they have our best interest in mind, they have safety concerns (there is some risk), they are trying to devote limited resources to those that have decent odds of passing, etc. ... but it's so hard to be repeatedly told "no".
For me, the risk of challenging my dd was worth it, but I do acknowledge that my perspective was not objective ... as families, our QoL is affected. There were factors that entered into my risk-benefit calculus that probably wouldn't be given the same amount of weight by an allergist, probably rightly so. Having the guidance of a great allergist is so important.
On the other hand, people are often given medical choices by docs that range from conservative to aggressive. I think it's a fair question to consider whether patient preference should be given more weight in general. In the end, each doc has the final say on what choices they offer us.
This is really dependent upon how risk-averse your particular physician feels, too. That may have a lot of different input streams, but ultimately some doctors are just more concerned about risk than others in challenges.
Our doc is, for example, nowhere near as open to risk as Boo's has been, but he's far better than many good food allergy docs.
One question I'd ask a physician if I wanted to do a challenge is:
How high does the probability of failure (or low does the probably of success) have to be for you think that a patient SHOULD NOT challenge a food?
With Boo's doc, I think she has reported that 50-50 is about the break point.
With ours, the risk calculus is slightly different; he'll offer a challenge at about the 65-75% chance of a pass.
In both instances, these are either known or likely anaphylaxis triggers, mind. Our allergist will encourage a challenge pretty strongly if there is any Hx of ingestion that supports the idea that a pass is likely, and even moreso with an allergen that hasn't ever been a likely anaphylaxis trigger.
If they don't perform them, good luck. Our first one in Virginia did not. Period.
When DS' score went down to 3, Burks told us that the next year, if his score went to a 2, we could do a challenge. But it went up to 12 the next year, soooo.
We did get a component test, and DS has markers for the dangerous ones.
With long term, low dose SLIT, DS' IgE has gone down at each visit (measured twice a year). Last week his allergist said that it's not an exact science to know when it's okay to do an IOFC--it's a combination of things. So low IgE (around 2?) plus other factors.
Oh--yeah that percentage. DS' allergist said some are comfortable with the 50/50. She, however, is not.
If they don't, then they won't. We were with a teaching hospital for a while and they were so conservative in their dr training that they simply don't believe in challenged unless it is a negative skin and blood test.
Ds tends to have negative blood and positive skin tests. I pressed for a challenge. They weren't feeling it, so I switched to Johns Hopkins. We would have been spinning our wheels even longer if I had stayed at the teaching hospital. Hopkins, as a research hospital, is generally more accepting of pushing the envelope. That's been the difference for us in the long run. :yes:
I need to find out more about the component test and get it done. We need an allergy visit this spring too.
I can also get ds into research studies that weren't open to him when we went to the teaching hospital, which could come in handy.
It's an hour and 20min to the allergist each way. Not a big deal in the grand scheme of things because we get what ds needs from them.
My non-MD opinion. If there is no past reactions history and the person is old enough to voice if they are having internal symptoms such as throat constriction, stomach pain, etc, then I would push for it since testing has a very high false positive rate.
If there is a past reaction history I would not challenge unless the person tests fairly low. I would want a skin test under whatever the current recommendations is or RAST under it. I used to know the levels that gave you a 50/50 chance to pass a challenge for peanut but I don't remember now. I am sure you can find that info if you google enough. Hopefully someone here knows. They have been published.
What are your child's recent test scores? What is your child's reaction history to peanuts (or whatever food you are thinking to challenge)?
I am pretty sure that our allergist will usually only challenge if skin testing is around 4 mm or so. Certainly it would have to be under 8. I think 8 is the cut off for skin for the PPV for people who have a for sure reaction history.
For CAP RAST I think the # is around 1 or under for a good chance to pass but I think I remember it being around 2 for a 50/50 chance.
My son had less than 0.35 for milk cap rast but .6 mm skin and failed an oral challenge years back. He has since passed baked. We did baked milk because he had a negative skin test. I'd challenge anything that was negative on skin testing. My son's allergist says that skin is a better indicator than blood of when a person has outgrown.
Good luck!
Hi, if it wasn't for the uknow, we would not have gotten a challenge. Current allergist and dr. sicherer both wouldn't even consider the challenge based on history, spt being positive and rast low then negative!
The uknow component 8 (sorry, pretty sure 8) was .03 and the other three components were negative. With this additional information, we were able to feel really confident that he's outgrown.
I understand how you're feeling. I feel like I know when the flip switched for my ds and that's been quite a few years, but you feel like the risk outweighs benefit when you're not sure.
Did you have the peanut component test?
Oh I thought you still went to Sicherer.
Mfamom what about for treenuts? Are you planning to do component testing for them and an IOFC?
we are looking for the result paper. They were positive to some over the years. the day we went to sicherer, they all came negative (if I recall correctly) except 2. he re did the test on the other arm and they were negative (he re did because he suspected carryover from birch).
So, I remember giving our allergist the sheet from sicherer, but my ds file there is seriously 6" thick and he couldn't find it when we were there. I'm also looking at home for the paper. I am also looking to see if we did rast for treenuts.
I would like to challenge DS2 for peanuts. He was tested before he had eaten them. We have had negative SPT's and while his RAST is climbing (it is just barely a 3), our not so conservative dr refuses without UKnow. So that is on my plate in the next few months.
Only possible reaction is hives after putting his arm in a tub of green peanuts at Whole Foods. But he is the child that hives if you look at him wrong.
He did have food reactions for a while but all of them have seemed to gone away.
Didn't mean for folks to get hung up on "demand" when I suppose I really meant "insist" . . . a kinder, gentler "demand" maybe?
I think there comes a point where a parent/patient needs to get the allergist to plainly state WHY NOT -- all the reasons -- so that when see another allergist, there is concrete info to weigh pro/con and with the 2nd opinion.
There is such divergence in the allergist community so far as the PRO in-office therapy vs "not ready for prime time" that it should not surprise me we have differing views and practice for allergists so far as in-office food challenges to confirm diagnosis.
Not long ago some of us have had situations where the allergist would not even do repeat of the SPT for the ana allergen -- esp given the reax history.
i think that the time comes to "insist" when there is enough information to support a challenge.
Even though DS had RAST number go from low to Negative, that spt never changed from that huge 17mm wheal, plus the big reaction and a few other small ones, they didn't think it was worth the risk.
Even with many years of NO trouble and overall changes in his eczema, tolerance for the outdoors etc, they wouldn't.
then, when the information came back from the uknow, it was no brainer to do a challenge.
I think there is a lot more agreement on this topic than on desensitization. There are studies and articles published on this topic giving PPV and NPV for passing challenges for various allergens for both skin and blood tests (this is for people who have a known history of past reactions.) If you don't have a known history then challenging is the only way to know if an allergy exists. If would be good if someone had links to some of those articles. If you are a member at KWFA and post about this there someone can give you links. I would think someone here would also have the links, though.
Ajas-- I would truly hope that most people eventually have a relationship with an allergist in which they can ask such things quite frankly.
What are your reasons for being reluctant here? Please explain your thoughts on this subject to me.
This is the kind of dialogue that our allergist readily engages in with well-educated patients who ask. I love that about him.
How is the rate of outgrowth calculated for peanut? Is it dependent on the rate of passed challenges? Which would mean not going through a challenge at adolescent or young adult even w/o recent history of reaction would affect that ultimate number?
Quote from: CMdeux on February 02, 2014, 05:24:13 PM
With Boo's doc, I think she has reported that 50-50 is about the break point.
Actually, my son's doctor is quite conservative. We have changed doctors in the practice to the one who participated in the OIT trials and is less conservative, but they really still like to see values essentially become 0 before they will test.
My son is still Class 3 for milk - something like an 8 for total milk. I think she could see the last time we were in how exasperated I was with the slow pace of challenges, particularly since the RAST numbers have not seemed to mean much. However, this is the highest one he's attempted .
If he passes this one, we'll talk about hazelnut (he's ~12 for that).
The Mt. Sinai recommendation is that a child be tested for milk or egg every two years he/she has gone without a reaction.
RAST tests seem to be a measure of how well you avoid the allergen, more than they are a measure of still having an allergy. My son's peanut RAST is way up again after all the food challenges. The question is when the magic tolerance window occurs.
Quote from: booandbrimom on February 05, 2014, 05:36:23 PM
If he passes this one, we'll talk about hazelnut (he's ~12 for that).
The Mt. Sinai recommendation is that a child be tested for milk or egg every two years he/she has gone without a reaction.
RAST tests seem to be a measure of how well you avoid the allergen, more than they are a measure of still having an allergy. My son's peanut RAST is way up again after all the food challenges. The question is when the magic tolerance window occurs.
That doesn't really correllate with my experience with DD. Her egg RAST went down the year of her last reaction (contact but rubbed allergen in her eye). Her RAST scores have gone up and down over the years, but her egg was at its lowest this year (5.43) even though she no longer avoids cross-contaminated things and occasionally eats baked egg items (cannot get her to comply with the regimen since her baked egg challenge).
Is the 12 you mention for the hazelnut a RAST measurement? DD's is 1.96 and there's no talk of challenging her.
Yes, 12 is the RAST. This just came up during the clinical trial, as they were thinking they could use hazelnut as the allergen if peanut didn't work.
It may be a pollen cross-reaction. None of us remembers a reaction to hazelnut - my son swears he's eaten them.
Unfortunately nutella isn't available for you guys as a challenge material, either. :-/
I have whole in-shell hazelnuts if you ever need them. I've had about three gallon containers of them stashed in my china hutch for a bit. Just sayin.
[spoiler]But you have to promise that you'll never call me a squirrel.
;D [/spoiler]
Quote from: booandbrimom on February 07, 2014, 12:33:41 PM
Yes, 12 is the RAST. This just came up during the clinical trial, as they were thinking they could use hazelnut as the allergen if peanut didn't work.
It may be a pollen cross-reaction. None of us remembers a reaction to hazelnut - my son swears he's eaten them.
Does he react to birch pollen, I think hazelnut is cross-reactive with birch. Wow, DD's RAST is so much lower and there's never been a mention of challenging. She's never had hazelnut either. If you and the doctor are up for challenge, I'd go for it; it would be so nice to get rid of an allergy.
DD will always be allergic to peanuts and tree nuts, and I'm beginning to think that she'll never outgrow egg. Even if she did outgrow egg, I just don't see her eating it.
CM, I may take you up on the hazelnuts for DS as we *may* get to a point this summer where allergist would agree to challenge her on that.
Sure-- but unless you have a milk allergy, nutella is a GREAT option. :)
:yes:
And look in the Teen Travel thread. I show a picture of portable Nutella. You can get it at Target. It comes in n a box that is just a bit bigger than a Wet Ones box and had packets. That way you can open small amounts and easily and without mess throw the rest away if it doesn't work.
I thought I remembered something about Nutella not being the best for challenges & found this ...
Re: Dd's OIT for PA, an update (http://foodallergysupport.olicentral.com/index.php/topic,6991.msg78948.html#msg78948)
it mentions an AAAAI tweet on the topic.
Links, I recalled that as well when we challenged, and although I could never FIND the AAAAI source for the info (and still can't)-- we didn't use Nutella for DD's challenge--
Food challenge-- hazelnut. (http://foodallergysupport.olicentral.com/index.php/topic,4289.0.html)
This (http://www.aaaai.org/ask-the-expert/oral-symptoms-from-ingestion-of-food.aspx) seems to indicate that the major concern in that particular question was related to heat-processing which might have reduced the allergenicity of an OAS offender in Nutella in particular.
Honestly, our allergist suggested Nutella for the challenge. I just wanted a better idea of threshold if she failed, given where we live. Knowing whether or not her threshold is VERY low or quite high makes a huge difference in quality of life here. For most people it wouldn't because daily exposure is not very likely as it is with us (we have filbert/hazelnut TREES-- everywhere... shell-based MULCH-- everywhere....).
Honestly, I'd rather she have the experience of the texture / chew of real nuts. I think it would be helpful for her . . . esp if it is a fail.
Quote from: maeve on February 07, 2014, 03:25:14 PM
Quote from: booandbrimom on February 07, 2014, 12:33:41 PM
Yes, 12 is the RAST. This just came up during the clinical trial, as they were thinking they could use hazelnut as the allergen if peanut didn't work.
It may be a pollen cross-reaction. None of us remembers a reaction to hazelnut - my son swears he's eaten them.
Does he react to birch pollen, I think hazelnut is cross-reactive with birch. Wow, DD's RAST is so much lower and there's never been a mention of challenging. She's never had hazelnut either. If you and the doctor are up for challenge, I'd go for it; it would be so nice to get rid of an allergy.
DD will always be allergic to peanuts and tree nuts, and I'm beginning to think that she'll never outgrow egg. Even if she did outgrow egg, I just don't see her eating it.
Gosh, never saw this Maeve. Yes, my son reacts to birch and just about every environmental allergen.
I think the calculus changes a bit when a child's overall IgE is so high. The doctors at Children's said they would not do a challenge for the hazelnut at that level (other than in the context of the clinical trial), so doctors definitely disagree.
I believe birch pollen was the reason my ds showed positive to many tree nuts. I cannot remember all the details now.
This summer is going to be a huge batch of at home intro and in office challenge. The allergist is game and DH will be working here, FIL will be home. That will allow me the luxury of time to work through my own list. Allergist is convinced he can squash my birch issue and that it's worked for all of his patients that use pollen immunotherapy to eradicate OAS to fruits.
We've got too many free floating allergens that need to be challenged. DS1 is old enough that in order to be as free as possible we need to confirm tree nuts and baked egg. It would be important come 504 time in fall.
Next year for DS2 I think we need to really check if oats and beef are merely skin results or true allergens. By then he'll probably be able to communicate in rudimentary terms if his stomach hurts or his throat itches.
DS1 will just have to get on board with the egg challenge since he has a good chance of tolerating baked egg across the board.
Allergist is convinced he can squash my birch issue and that it's worked for all of his patients that use pollen immunotherapy to eradicate OAS to fruits.
Yeah-- it lasted all of 20 months for DD, after a six year investment. :misspeak: As noted though, she's not most people, any more than your DS2 is. :-/
Soy is scheduled for the 14th. I think I'm going to push for egg in May. At this point I don't think I'll push for an egg SPT prior to challenge. It doesn't seem to be all that related to baked egg. I'll have to see the Sinai records for the date of the last RAST. We had to reschedule right as Sandy hit I think it was no later than Jan 2013. This time I'm going to stick the peanut component on. Note I'm not hoping for much but the Sinai test was a little weird. Yeah it was over 100 for peanut but it was some sort of unexplained novel test.
*#&!@%^ BARLEY for DS2. That was a momentary vent in the form of emotional belch.