OIT may not produce lasting effects?

[CMdeux]

http://www.medscape.com/viewarticle/779896

This is what our allergist has been hearing from insiders running trials for about seven years now.     Unfortunately.

The other thing (and he disagrees with both Wood and Wasserman here) is that there are some distressing anecdotes within treatment groups/study cohorts where the subjects SEEMED to be doing fine, seemed to be COMPLIANT with treatment protocols... and still experienced anaphylaxis as a result of an exposure that SHOULD have been fine-- and was, in most cases, authorized/mandated by the protocol. 

There isn't any way to identify who those subjects are until it happens, but it seems to be a worryingly high number-- maybe as many as 10%, but certainly more than 1%-- of patients undergoing OIT.

With all due respect to Dr. Wood, here... his assessment that 38% of patients who experience "frequent and predictable" symptoms to milk consumption does NOT sound to me like people who are 'reluctant to consume the allergen' and are 'self-selecting avoidance.'  That sounds (to me) like it's what he prefers to believe, given that the alternative is both confusing and deeply sobering.

This study is precisely why our allergist has had us stablize DD's baked egg dose-- and GO NO HIGHER.  Initially, we all thought that we'd have her progressing to higher doses, and had fantasies about a life with quiche and omelettes.  Well, we're still waiting on "normal" tolerance with milk, so I seriously do NOT think that this is happening. 


How many people here have had a child seemingly able to pass a challenge-- or tolerate low-level contamination for months, only to redevelop systemic symptoms over time and with additional exposure?  A lot.

It's very troubling.  I'm reassured that allergists are at least being TOLD some of this story, though.  For too long, they've labeled families "neurotic" when we refuse to continue feeding an allergen after a theoretically passed food challenge.

[CMdeux]

Ahhhhhh- okay, better reporting of Dr. Wood's statements in this one.  I feel better now.

http://www.medpagetoday.com/MeetingCoverage/AAAAI/37544

I stand by our allergist's disagreement, btw, since he does feel that even illness/hormones can fluctuate the threshold enough to be problematic while actively ON a maintenance dose, and Woods apparently doesn't-- but also that withdrawal thing is worrisome.

We've done this a few times to see whether or not DD "holds" her dose with baked egg, incidentally.  We wanted to know before she went any higher in dose.  The answer?  She doesn't regress a lot, but she also doesn't 'hold' the dose tolerance completely.

[Macabre]

From the tweets I've seen (but haven't had the chance to look into--and I haven't had the chance to look at the link published, but I'm betting it's referencing hte same thing), SLIT was determined to have longer lasting effects.


Okay--but so what?  Really?  Wouldn't a few years without the allergy be great? 

I don't see "it might not last forever" as a reason frankly.

Also, this was specific to dairy only as far as I've read.

[CMdeux]

That's all that has been published thus far, anyway-- but the entire reason that this was studied in the first place was that there were troubling reports coming out of early desensitization cohort groups.  Only thing was-- they hadn't been followed systematically or anything, so it wasn't "official" or publishable.

Okay, so here is the part that is worrisome, according to our allergist-- the fact that there is a small, but meaningful % of patients that seem to ABRUPTLY stop tolerating the dose.

When that dose is not low (as compared with SLIT, for example, where the doses are quite conservative)... that is the kind of triggering dose that is very very dangerous.

That is why allergists in the research track are really cautioning so strongly about a general roll-out clinically.  It is SO not ready.

I mean, it's one thing if you look at desensitization as being a bit like Xolair.  Quite another if you think of it as a "cure" and live your life with that (very different) assumption.  KWIM?

Wouldn't a few years without the allergy be great?

Not if you can't predict just when you get it back, it wouldn't be...     Plus-- having done that?  I mean, having THOUGHT that we'd lost an allergen that we hadn't really?  It's emotionally devastating.    It's the kind of hope that you gain with a blood draw.... times ten thousand.  And then the crash as you get it jerked away from you... yeah, no thanks.

[hedgehog]

I did not read the links (can't read anything involving too much brain activity this early), so I have a question that might be addressed in them.  Were these people who had been kept on a maintenance dose long-term?  DS is on 3 peanut M&Ms a day, and was told this is long term, possibly life-long, to attempt to keep his allergy from resuming.  And where he went for desensitization said (and I am really paraphrasing here) that it was already known (over a year ago when he started) that those who participated in early studies were at a risk for losing their tolerance, and this was to try to prevent that from happening.

[GoingNuts]

What scares me is the thought that after tolerating the dose an, *ahem*, young adult male, for example , could become cocky and stop carrying their epi, KWIM?  Then, all of a sudden, BAM.  A reaction.  Totally unprepared.

This is what makes me nervous about the component test as well.  What if he takes it, is considered one of the "lower risk" folks who doesn't have to worry about X-contam, becomes complacent and reacts anyway? 

[maeve]

With all due respect to Dr. Wood, here... his assessment that 38% of patients who experience "frequent and predictable" symptoms to milk consumption does NOT sound to me like people who are 'reluctant to consume the allergen' and are 'self-selecting avoidance.'  That sounds (to me) like it's what he prefers to believe, given that the alternative is both confusing and deeply sobering.

In his defense, I will say that with DD's baked egg protocol, he did not feel that what DD said she was feeling (complaining of tummy issues) was anxiety related or simply not liking egg.  While I felt that DD complaining about her tummy (with no objectively observable symptoms of GI issues) was likely anxiety, he said it could actually be the allergy.  He also agreed with me about not tricking DD with a blind challenge to determine if it were anxiety symptoms or really a reaction.  I would say that he's pretty conservative in his approach.

[Macabre]

Good point about not having an Epi and the emotional impact of getting an allergy back. But the study was about milk specifically. So I don't think it's fair to generalize (in the subject line).

It may be true for peanut (I mean, we've pretty much known this, at least in terms of having to take the dose forever), but the published study was for dairy.  And it's not clear (I may have missed it without having  had coffee) how many didn't drink it because if reaction and how many didn't because they really don't like it?

[my3guys]

Like Hedgehog, I'll have to go back and read the links when I'm a little more awake and can absorb.  Anecdotally, holy macarel!  DS hasn't been as diligent about drinking milk every day lately...and is starting to complain of symptoms again, mild...but...oh man. Just as I was starting to wonder, boom, here's this thread!

And on a side note, I feel much better about not letting Mt. Sinani push me into taking him off all dairy for 3 mos to see if he "holds" his thresh hold. He's still got other limiting allergens, isn't a fan of meat this days, and his diet would be atrocious if he lost dairy.  And, he still has an epi due to his other allergens, so I felt he was at a greater risk nutritionally, and emotionally if I let him risk getting the dairy allergy back. It took him four years to get to the point of drinking milk, I didn't want to repeat that process in the teen years. NO thank you.

One nurse I talked to about it really gave me a hard time . I'm so glad I stood my ground! In Mt. Sinai's defense, she was filling in for someone on maternity leave, and when the head nurse came back, I filled her in and she was horrified, and completely understood my reasoning.

Sorry to go on a bit of a tangent, but wow did this strike a nerve! Thank you so much for posting CM

[twinturbo]

Although I did read it I may have missed in great detail whether or not the milk was heat treated at any point or not?

[Macabre]

This is not heat treated milk as far as I understand.

[CMdeux]

It's on a spectrum, as I understand it-- some of these are people who were symptomatic with unheated milk and pulled back to baked doses.

I really don't understand why this WOULDN'T apply to other food allergens.  I do know that the allergists in meetings and our own-- really don't seem to think that.  I'd think that if they believed that this was JUST about milk allergy, then they'd be saying that.  But they aren't.

My3guys, we have pulled DD off her egg dose to 'test' informally how well she holds that dose when off of daily dosing.  HOWEVER- we did this after only 18 months, and we did it with quite a low dose.  The reason was that we (meaning us and allergist) wanted to know how well she held that dose, because that determined how safe it was going to be to push it higher.  In her case, we all agreed that at least for now, this is about threshold elevation, and since she doesn't really hold the dose well, we need to make sure that the daily dose  is one that we can easily reestablish without much risk.  It has to be low.  I guess that makes what we're doing much more akin to SLIT than to some of the more aggressive OIT trials.


Perhaps it's harder with milk because that tends to be one that people really WANT to actually get in to the diet, so it becomes something where you want the threshold to be VERY high-- and that may be what makes it problematic.  Most people who desensitize for egg or nuts just aren't that into getting the allergen into "normal consumption" range. 

[lakeswimr]

I have a friend who has a child who went from MFA and then did baked milk and baked egg and now her child isn't allergic to milk or egg.  The child now has one FA down from 4!  Fantastic IMO.  Looks like it is sticking, too.

In our case, DS passed a challenge for one food and then had a serious ana reaction a few weeks later.  Looking back I don't think the challenge was a clear pass as he vomited at the end.  He told us it was from gagging.  Still, even with what he vomited he consumed more than one serving so it was considered a pass.  He ate some less potent form of the allergen and then had ana to more potent forms.  And then I tried to keep the allergen in his diet and kept trying smaller and less potent amounts and finally minscule amounts and he reacted each time.    It seemed like a switch came back on in his body.  I don't think this is the same as desensitization, though.

I also have a friend who went through peanut desensitization with her child and it failed.  The child kept having ana.  They lowered the dose and then would bring it up slowly and he kept reacting.  They found that reactions were tied to exercise and carb consumption.  If he ate carbs with the peanut serving he absorbed it more slowly and had a better chance of tolerating that day's dose.  If he exercised any time close to the dose he had a big chance to fail and react.  They spent a few thousand and finally had to give up.  The child was too traumatized by repeated ana. 

DS can do baked milk and I look at the person I know who crossed off 3 allergens and I want to be her.  I want to just deal with a peanut allergy.  That would be so nice and easy compared to our MFAs.  Not that peanut allergy is easy but that would be much easier than DS's list (which includes peanut).  I feel I should be pushing the baked milk more but I haven't had time to do it the way that woman did.  Ds's tolerance for baked milk is for sure increasing and it seems he will outgrow.  I beat myself up mentally about what I did wrong with the other allergen that he seemed to outgrow and redevelop.  If only....  But I don't know that.  It is what it is. 

[Gray]

lakeswimr,

If you had to do it over again, what would you do differently?

I think many of us are too hard on ourselves 

[Gray]

http://www.medscape.com/viewarticle/779896
It's very troubling.  I'm reassured that allergists are at least being TOLD some of this story, though.  For too long, they've labeled families "neurotic" when we refuse to continue feeding an allergen after a theoretically passed food challenge.