So, when do you just DEMAND a challenge?

[ajasfolks2]

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.

[LinksEtc]

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.

[CMdeux]

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.

[Macabre]

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.

[Macabre]

Oh--yeah that percentage. DS' allergist said some are comfortable with the 50/50. She, however, is not.

[yelloww]

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. 

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.

[lakeswimr]

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!

[Mfamom]

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.

[lakeswimr]

Did you have the peanut component test? 

[Macabre]

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?

[Mfamom]

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. 

[YouKnowWho]

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.

[ajasfolks2]

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.

[Mfamom]

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.

[lakeswimr]

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.