Food Allergy Support

Discussion Boards => Main Discussion Board => Topic started by: CMdeux on February 26, 2013, 06:40:21 PM

FAS has upgraded our forum security. Some members may need to log in again. If you are unable to remember your login information, please email food.allergy.supt@flash.net and we will help you get back in. Thanks for your patience!

Title: OIT may not produce lasting effects?
Post by: CMdeux on February 26, 2013, 06:40:21 PM
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.


Title: Re: OIT may not produce lasting effects?
Post by: CMdeux on February 26, 2013, 06:56:52 PM
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.

Title: Re: OIT for Dairy may not produce lasting effects?
Post by: Macabre on February 26, 2013, 11:06:35 PM
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.
Title: Re: OIT may not produce lasting effects?
Post by: CMdeux on February 27, 2013, 12:11:05 AM
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?


Quote
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.


Title: Re: OIT may not produce lasting effects?
Post by: hedgehog on February 27, 2013, 05:24:45 AM
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.
Title: Re: OIT may not produce lasting effects?
Post by: GoingNuts on February 27, 2013, 06:12:31 AM
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? 
Title: Re: OIT may not produce lasting effects?
Post by: maeve on February 27, 2013, 06:36:33 AM
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.
Title: Re: OIT may not produce lasting effects?
Post by: Macabre on February 27, 2013, 06:39:04 AM
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?
Title: Re: OIT may not produce lasting effects?
Post by: my3guys on February 27, 2013, 07:00:49 AM
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 :smooch:
Title: Re: OIT may not produce lasting effects?
Post by: twinturbo on February 27, 2013, 07:53:23 AM
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?
Title: Re: OIT may not produce lasting effects?
Post by: Macabre on February 27, 2013, 08:57:45 AM
This is not heat treated milk as far as I understand.
Title: Re: OIT may not produce lasting effects?
Post by: CMdeux on February 27, 2013, 09:51:17 AM
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. 


Title: Re: OIT may not produce lasting effects?
Post by: lakeswimr on February 27, 2013, 06:44:24 PM
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. 

Title: Re: OIT may not produce lasting effects?
Post by: Gray on February 27, 2013, 08:49:18 PM
lakeswimr,

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

I think many of us are too hard on ourselves  :grouphug:
Title: Re: OIT may not produce lasting effects?
Post by: Gray on February 27, 2013, 08:53:55 PM
[url]http://www.medscape.com/viewarticle/779896[/url]
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.


 :yes:


Title: Re: OIT may not produce lasting effects?
Post by: twinturbo on February 28, 2013, 07:56:55 AM
Yeah, I feel like I'm floundering about milk in the MFA list and low threshold, big reaction. Making it even more complicated is the same kid drank an extensively hydrolyzed casein infant formula without issue, and I firmly believe his lower casein numbers compared to his high whey is no coincidence.

I'm mom. I'm supposed to know what to do. Maybe I could start with baked hydrolyzed casein.
Title: Re: OIT may not produce lasting effects?
Post by: aggiedog on February 28, 2013, 01:26:47 PM
Interesting.  My biggest concern with OIT for dd is that we would do something to make her future worse than if we'd done nothing at all.  It seemed that the worst that would happen is that the OIT wouldn't work and she'd be back at square one, living a PA avoidance life.  I think even if her tolerance wore off, she wouldn't be worse off than before OIT.  Unlike milk, she is not looking to eat large doses of PN's on a regular basis (or ever).  Her goal was less anxiety, more freedom.   That she has achieved.

As for why they are focusing on milk?  Don't know.  I do know that the maintenance dosing for milk was larger doses and more frequently than the PN doses with the Wasserman group.  Initial maintenance for PN was 1/2 tbsp PB twice a day, while milk was a cup three times a day.  That might be harder to truly maintain.  Maybe the antigen is more dilute in the milk and it takes that large quantity to get enough for exposure?  Maybe it is, on average, less antigenic?  More antigenic?  More kids that they have followed for longer?

Title: Re: OIT may not produce lasting effects?
Post by: CMdeux on February 28, 2013, 02:17:27 PM
Talked to allergist (fresh from San Antonio) this morning-- he went to this talk, so he and I chatted a bit about the significance of this one.

Will update later.
Title: Re: OIT may not produce lasting effects?
Post by: lakeswimr on February 28, 2013, 07:44:57 PM
lakeswimr,

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

I think many of us are too hard on ourselves  :grouphug:

Good question.  I can't think of anything, really.  i tried my best.  Thanks.  :)
Title: Re: OIT may not produce lasting effects?
Post by: ajasfolks2 on March 01, 2013, 02:36:56 PM
Related blog, well worth reading!

Friday, March 1, 2013
Milk Allergy Cure: Glass Half Empty, or Half Full?

http://foodallergybitch.blogspot.com/2013/03/milk-allergy-cure-glass-half-empty-or.html
Title: Re: OIT may not produce lasting effects?
Post by: CMdeux on March 01, 2013, 10:46:10 PM
Okay-- the upshot after talking with our allergist is that MOST research allergists still don't believe in "resensitization" after a passed challenge.

They just don't.

The current party line is that "IgE rises with avoidance" and conversely, that it falls via exposure, and that therefore, if a person has both low IgE, a negative skin test, and passes an IOFC, they are tolerant-- they aren't allergic.

So what about those people-- and anyone in this community KNOWS they exist-- who dutifully go home and begin, as advised, feeding their newly non-allergic child that allergen, and the child complains about feeling funny... then reacts objectively after a period of weeks or months?

I asked that question, by the way.  His feeling is that during a challenge, that person probably WOULD be symptomatic somehow... and that maybe stricter criteria on what constitutes a pure "pass" could prevent that.

He also was very clear that the research/clinical community as a whole does NOT believe that regular consumption after a true passed IOFC ever results (well, "never" is a long time, but you know) in a redeveloped allergy. 

Redeveloped allergies come from skin contact + avoidance.  Period.

(This really surprised me.  Of course, I probably surprised him by stating baldly that while I respect his opinion, I can't believe that it is 100% correct for everyone.  In fact, I tartly pointed out at one point that I was pleased that physicians are seeing some of the things that I have been hearing from distraught parents for about nine years now.  Welcome to the impossible world of "my food allergy doesn't fit your theory."   :-/  )

About THIS study in particular:

a) no, not a surprise (to either of us, as noted he and I have had a number of conversations about OIT over the past four to five years)

b) no, not just milk... seems to be true in most of these studies to some degree

c) "there are just SO many unknowns still."  (Said with some angst/dispirited affect-- he wanted this to be the answer as much as anyone else did... after all, he's an allergy parent, too... but there are still SO many things that aren't known.)

Another interesting tidbit that I picked up from him-- and this one surprised me SO much that I asked him to repeat it and made a joke about it that my DD didn't appreciate, just to make S.U.R.E. I hadn't misunderstood him.  Okay, so you know how common wisdom has it that anaphylaxis fills up the allergy cup and causes a person to be MORE reactive in the weeks after a reaction?  He says-- not so.  In fact, a SPT can be completely negative for a few weeks after anaphylaxis to the allergen, which is why he always waits.  ???  I have no idea WHY that could be true.  It certainly seems to run counter to a lot of on-the-ground, in-the-field experiences from a lot of people I know...

Is it possible that the drug cocktail given for anaphylaxis causes the suppression of the response??  I have no idea what to make of this.  But I figured I'd pass it along.

The joke?

Oh, I wittily remarked that this sounds like a lovely desensitization technique without all of the cautions we usually ascribe to such efforts.  Desensitization through anaphylaxis.   Repeat as needed.  ;)   Yes, I have an odd sense of humor.

Title: Re: OIT may not produce lasting effects?
Post by: twinturbo on March 02, 2013, 05:37:59 AM
I put this exact same question to Sicherer in office and his answer at the time was plainly that he couldn't say whether it was likely or not, but possible to show objective symptoms at any time. Essentially, the idea of keep it in your diet or lose it was less likely a cause than if the allergic individual was ever likely to outgrow or not, or allergic in the first place.

He further said (he may have altered his opinion since then) that much of this thought was possibly due to allergists extrapolating all allergen from one study on children re-developing symptoms after peanut OIT.

As to FAHF-2, OIT, and Dr. Li, during the time I was establishing with her as a patient DH corresponded with her a bit. One of his direct questions he asked about the possibility of using FAHF-2 in conjunction with OIT in similar way to Boston's Xolair-milk studies: she declined to answer and we of course didn't push it.

The purpose in relating this is to put what cards I had on the table. To be honest I'm not sure where this recipe is going but I do think since we have another visit to Sicherer in May I'm going to put the same dang question to him, again.

Thanks, CM and everyone else with anything on milk & MFA. Recalculating...

Any chance of a link to that conference talk? I'd like to hand it to Sicherer as a framework to revisit the subject. Something specific and objective in hand makes an efficient opener.
Title: Re: OIT may not produce lasting effects?
Post by: Macabre on March 02, 2013, 07:05:34 AM
I believe the conference talk was based on the paper. You can look for tweets about it if you want to be in the room with them. I have a list of docs who were live tweeting.
Title: Re: OIT may not produce lasting effects?
Post by: booandbrimom on March 02, 2013, 07:31:37 AM
Okay-- the upshot after talking with our allergist is that MOST research allergists still don't believe in "resensitization" after a passed challenge.

They just don't.



You do have to look at it from their perspective. They think we're all crazy...overly cautious...avoidant... It's easy to look at it all and conclude these kids are throwing in the towel because of psychosomatic symptoms, or oral-only symptoms.

I don't know how researcher explain the anaphylaxis. Panic attacks mistaken for anaphylaxis?

It's tough. I learned during the clinical trial just how far a reaction has to go before visible symptoms appear. The last challenge, the doctor didn't call it until she could see the swelling and redness in my son's throat. By then, he was pretty sick. I would not normally wait that long to give him epinephrine. But it makes it hard to prove when initial symptoms can be so subjective.

(And thanks for the link, Ajas!)
Title: Re: OIT may not produce lasting effects?
Post by: twinturbo on March 02, 2013, 07:50:27 AM
On this I want to eat from the lowest part of the information food chain possible between patient and doctor. I did look at the conference program seeing at least two likely talks on the daily schedules but not necessarily the papers. We have OIT on our objective list to cover next appt anyhow, this year's appts are all about evaluating for baked egg and tree nut challenges.

I'm less enthused about the live tweets from the talk for a specific reason: DH presents talks at conferences on his papers. They're interpretations of findings, data, which will be open to critique. In our case we will be wanting our allergist's interpretations on the data and findings and apply his patient with specificity, maybe asking what can or should not be generalized as we consider future treatment. Yes, the allergist in DS1's case is Sicherer who sits in a mountain of data himself but we still need an individualized application and interpretation for patient.

On an interpersonal front I don't want to present him with third party interpretations and ask him to challenge or confirm it, particularly since he was in attendance at the conference. The best method for us under these circumstances is read paper, ask dr for interpretation, listen to answer. Ultimately how we handle this affects both our appointment time and what goes in the medical record.

In other words I plan to keep the question simple, shut up, and listen intently. Or rather DH will since he takes DS1 there.
Title: Re: OIT may not produce lasting effects?
Post by: CMdeux on March 02, 2013, 09:19:23 AM
Okay-- the upshot after talking with our allergist is that MOST research allergists still don't believe in "resensitization" after a passed challenge.

They just don't.



You do have to look at it from their perspective. They think we're all crazy...overly cautious...avoidant... It's easy to look at it all and conclude these kids are throwing in the towel because of psychosomatic symptoms, or oral-only symptoms.

OR-- that we have conveniently "left out" the part where we've actually been avoiding the allergen rather than consuming it.  That was our allergist's take, anyway.    I pointed out that as admin/CM here, I've seen several people-- even those involved in studies-- who very definitely did NOT do that and got burned anyway.

Quote

I don't know how researcher explain the anaphylaxis. Panic attacks mistaken for anaphylaxis?

It's tough. I learned during the clinical trial just how far a reaction has to go before visible symptoms appear. The last challenge, the doctor didn't call it until she could see the swelling and redness in my son's throat. By then, he was pretty sick. I would not normally wait that long to give him epinephrine. But it makes it hard to prove when initial symptoms can be so subjective.

(And thanks for the link, Ajas!)

Oh-- and here it is important to know that our allergist is one of "the" guys on antibiotic allergy and desensitization protocols (he's really a keeper, our guy-- he's just got a fabulous background in FA and makes a point of staying current):

he feels that the people who are LIKELY to be in that minority group who are 'harmed' or at the very least not HELPED by immunotherapy protocols of one kind or another are usually identifiable during the updosing phase.  Those who have reactions during updosing are much more high risk than those who don't-- and this probably carries forward in time, too.  I didn't specifically address this with him, but he indicated that for this reason DD is very high risk given her history with SCIT (which would probably have been inadvisable with another allergist, frankly)... and we're holding our collective breaths to see whether 6y of treatment will "hold" this spring here.  Anyway.  There does truly seem to be a patient population which is highly refractory to desensitization efforts, but it tends to be a global phenomenon.  Beyond that... we were back to "there are so many unanswered questions..."

But this is why he-- and his old mentor(s)-- feel pretty strongly that OIT is not ready for general application clinically.  He made a very strong statement to me once about the Dallas protocol... which I won't repeat, but he's known Wasserman a long time, and he still has grave concerns about that protocol being used without exclusions for some patients.
Title: Re: OIT may not produce lasting effects?
Post by: Macabre on March 02, 2013, 09:21:17 AM
I know what Burks told us at our last appointment:  this is not ready for prime time.
Title: Re: OIT may not produce lasting effects?
Post by: CMdeux on March 02, 2013, 09:38:54 AM
With the exception of Wasserman and a handful of people in New England right now, that does seem to be the consensus from the Sinai-trained crowd, I think. (Our allergist is among them.)

 But then again, that group was just "cautiously optimistic" even when the initial endpoints were so positive out of Hopkins...  probably because even then, Woods was telling them insider stuff that didn't make it into the publication.  KWIM?  I know that our allergist has shared with us things that Wes Burks has talked with him about-- stuff that isn't so rosy about OIT.

We have a unique viewpoint as a community because so many of our members over the years have been study participants-- and willing to share so openly.  So we know about successes like Melissa's DS, but also of failures/study drop-outs like MommaB's DS.  We also know about things like lala's DS, gvmom's DS, and another member's DD (most recently); these are instances where a clear IOFC pass.... wasn't accurate.  I do think that our allergist believes me about this.  I told him that I'm just glad that these kinds of follow-up studies are starting to be presented at meetings-- this is stuff that clinicians and researchers NEED TO KNOW.  Patients with a good advocacy/support network already know.




Title: Re: OIT may not produce lasting effects?
Post by: twinturbo on March 02, 2013, 09:53:32 AM
Then would it not be fair to say that rather than the idea of anxious parents and testy kids who don't want to eat the allergens what futzes with OIT success is in identifying who is likely to be most successful with this therapy and also a 'clean' (for lack of a better word) pass is really something the practitioners need to standardize on their end first. Otherwise it's always the pateints playing defense against the strength of the data pointing to impossibility of becoming sensitized again?

Because this is going to affect the decisions of people like me who are at the beginning of pursuing this as a potential treatment. Anyone who's been through at least one oral challenge knows you have limited input on the procedure itself because of established protocols, and it's the doctor's notes about the challenge that get recorded.
Title: Re: OIT may not produce lasting effects?
Post by: CMdeux on March 02, 2013, 10:01:44 AM
TT, the link for meeting abstracts:

http://www.jacionline.org/supplements


The program (which includes all of the poster abstracts, but also the talks on the earlier pages-- couldn't find it on a quick read-through, but our allergist thought it was Mon morning?  Or Tu morning?):

http://www.aaaai.org/Aaaai/media/MediaLibrary/PDF%20Documents/Announcements/Fiinal_program_1.pdf



GOT IT-- Sunday afternoon session,  3604-- the talk was by Corinne Keet-- it was "Long-Term outcomes of Milk Oral Immunotherapy in Children."

Title: Re: OIT may not produce lasting effects?
Post by: twinturbo on March 02, 2013, 10:11:13 AM
Awesome, and in talking to DH realtime and editing post it's possible by using a software called Mendeley to set up an FAS-only repository of papers for shared reading. The access will be limited but between academic access and calling in favors with med friends it can get done. Accounts will be limited but should be sufficient. A rolling wishlist of papers would have to be established as well.

I gotta reread this thread a couple of times, too. It's like the afterconference conference.
Title: Re: OIT may not produce lasting effects?
Post by: CMdeux on March 02, 2013, 10:57:12 AM
Okay-- in conjunction with that-- this is HUGE news, by the way--

the feds have now insisted that federally-funded research MUST be open access.  FREE, in other words.

Seriously.   :happydance:  No more pay-to-view journal articles that our tax $$ paid for!!  YAY!
Title: Re: OIT may not produce lasting effects?
Post by: Gray on March 02, 2013, 11:07:31 AM
Anyone who's been through at least one oral challenge knows you have limited input on the procedure itself because of established protocols, and it's the doctor's notes about the challenge that get recorded.

This is very true.  During our IOFC, our dd had facial hives, but these were not recorded in the record.  It was written as a completely clean pass.

-----------------------------------

CM - Thank you so much for sharing this with us.  Thank you for listening to our story when doctors were turning their backs on us.  I knew I had to get another allergist from what I learned here at FAS.
Title: Re: OIT may not produce lasting effects?
Post by: GoingNuts on March 02, 2013, 11:29:26 AM
Gray, I'm so glad you found us.  :yes:
Title: Re: OIT may not produce lasting effects?
Post by: Macabre on March 02, 2013, 11:58:04 AM
:heart:
Title: Re: OIT may not produce lasting effects?
Post by: lakeswimr on March 02, 2013, 12:41:08 PM
DS passed an IOFC and ate the allergen at home a very short time and then had a more potent form of the allergen and failed at home (dr approved to do that at home) and it was as though that turned on a switch in him.  He reacted to every form of the allergen and smaller and smaller amounts and I couldn't keep it in his diet.  The allergist has a very hard time to accept this and has since skin tested him and seen a big positive result to that same food that had a neg skin test and which DS at in front of him in the challenge.  He seems to have the belief that you can't have the allergy come back that quickly.  It really did seem that the time I gave him the more potent form of the allergen (not that much more potent than what he ate in the challenge) flipped some switch in him to make him even more sensitive than he was before the challenge.  :(  Allergist wants to skin test again for this (and other foods) soon.  I will go along with it but I know DS will test positive.  He is allergic to that food now. 


This same allergist doesn't believe you can have contact ingestion ana like DS has had and insisted DS must have eaten something and lied to me.  DS would not do that.  Even years ago when much younger he remembered ana well and didn't want it again.  He has never once tried to sneak food.  He knows I'll give him whatever he wants and make up for anything he misses.  So, it does seem there are set beliefs about things like this.  I agree with bandboosmom that allergists do have to deal with a bunch of patients who think all sorts of untrue things, people who have had 'ana' to placebo during challenges, and much more.  Dealing with that all day would make me sceptical, too. 
Title: Re: OIT may not produce lasting effects?
Post by: sbs on March 02, 2013, 06:54:51 PM
Welcome to the impossible world of "my food allergy doesn't fit your theory."   :-/  )

I'd like to frame this quote!
Title: Re: OIT may not produce lasting effects?
Post by: sbs on March 02, 2013, 07:05:27 PM
DS passed an IOFC and ate the allergen at home a very short time and then had a more potent form of the allergen and failed at home (dr approved to do that at home) and it was as though that turned on a switch in him.  He reacted to every form of the allergen and smaller and smaller amounts and I couldn't keep it in his diet.

Do you mind me asking what allergen this was with (if you'd rather not say, I understand)?

Quote
This same allergist doesn't believe you can have contact ingestion ana like DS has had and insisted DS must have eaten something and lied to me.  DS would not do that.

I thought it was generally accepted that contact ingestion ana can happen.  Are you considering switching allergists?



Title: Re: OIT may not produce lasting effects?
Post by: ajasfolks2 on March 02, 2013, 10:06:46 PM
Threads like this one

Raison d'être

for Foodallergysupport.org . . .

and core reason for many here to have continued with FAS and this group of parents and food allergy families.

 :grouphug:
Title: Re: OIT may not produce lasting effects?
Post by: ajasfolks2 on March 02, 2013, 10:10:12 PM
(And thanks for the link, Ajas!)



No, THANK YOU, boo for your blog.

Truly.

 :)
Title: Re: OIT may not produce lasting effects?
Post by: LinksEtc on March 20, 2013, 06:27:35 PM
[url]http://www.medscape.com/viewarticle/779896[/url]


From the above article (my bold)...

Quote
We've worried that a patient may leave a study with a false sense of security.... Some of the more dramatic failures were kids that looked like absolute successes at the end of the study


I was just thinking that I find that infamous phrase very appropriate in this context.
Title: Re: OIT may not produce lasting effects?
Post by: LinksEtc on August 19, 2013, 03:23:54 PM
As to FAHF-2, OIT, and Dr. Li, during the time I was establishing with her as a patient DH corresponded with her a bit. One of his direct questions he asked about the possibility of using FAHF-2 in conjunction with OIT in similar way to Boston's Xolair-milk studies: she declined to answer and we of course didn't push it.


I'm wondering if (you/your dh) partially inspired this.
http://www.asthmaallergieschildren.com/2013/04/20/history-is-made-at-lunch/

I or a mod can delete this post if you'd like, but I just had to ask.
Title: Re: OIT may not produce lasting effects?
Post by: twinturbo on August 19, 2013, 03:42:36 PM
Doubtful. My best guess would be she and associated others had thought of it already but kept it mum with us. She could have also glossed over it since it would require more than a yes or no answer. What may interest you Links is the Dr. Li's background is similar to that of the current go to FDA folks whose purview are these medicanl herbs. Give me 15-20 min to edit a link in here to the Asian consortium she was part of back in about 2010. It looked like a regional conference akin to AAAI. All the big names surrounding TCM for FDA approval seemed to be there or the names there led me to them. Regardless they are all 'dual' medicine MDs for lack of a better term IIRC.

I think DH and I had a lucky guess is all.

ETA: No go. The page is gone. I'll try to find it a different way.
Title: Re: OIT may not produce lasting effects?
Post by: LinksEtc on August 19, 2013, 08:47:35 PM
Hmmm, pretty cool!

Thanks for looking for the link, but it's probably not something we're personally interested in at this time.
Title: Re: OIT may not produce lasting effects?
Post by: twinturbo on August 19, 2013, 09:03:43 PM
Totally understood. I meant interesting as in there seems to be a growing contingent of qualified MDs on both sides of the equation working in research and the FDA sharing similar backgrounds. It's like TCM coming out of the closet to join the ranks of the well studied pharmaceuticals. At least movement to get what has been in use for a long term to finally be set to scientific rigor.

That there are FDA officials with this sort of background surprised me. That they're working at least partially with MD researchers at Sinai of a similar background makes me super interested in where they're taking it because it's more big city medicine you'll find on the mainland than the small alt med shops independently run.
Title: Re: OIT may not produce lasting effects?
Post by: CMdeux on August 20, 2013, 08:15:37 AM
Yeah-- it's not really about alt med.  More like the scientific process.  I know a lot of people on the traditional, research side of things that have zero beef with herbals as effective pharmacotherapuetics.  Only with snake oil and woo.

The fact, is, though, that NCCAM funds this kind of research because traditionally, NIH won't... but equally unfortunately, NCCAM seems to be unable (or unwilling?) to sort the wheat from the chaff there, which winds up meaning that preliminary data... has almost no bearing on funding.  They also fund a lot of pure snake oil (which, to be clear, wouldn't happen if they relied heavily on higher quality preliminary data) which contributes to the problem.

There's also a barrier (VERY difficult to overcome) of such therapeutic approaches absolutely mandating (either traditional botanicals or allopathic modern pharmaceuticals, I mean) sham treatment and/or placebo comparisons.  Apples to apples, yk?

Few researchers do those, particularly not on the CAM side of things.  I can't quite decide if this is deliberate omission because they suspect that the efficacy is mostly placebo, or if they sincerely don't understand why comparison with other therapeutic interventions-- or with no treatment at all-- isn't a true comparison.  Ace researchers do use good experimental design, however.


Just don't be too surprised that there are hard-core scientists interested in TCM and other traditional herbal/apothecary practice.  We all know that some of that stuff is real.  And some of the real stuff probably isn't placebo-- which then makes the question more interesting.  Who wouldn't be interested in that??   :yes:    Some of those people seem to have a personal background which supports (explains?) the source of that interest, at least superficially.  Here's what I know from working in biological sciences, though-- it's ALWAYS personal.    Every single passionate person at a national meeting has an interesting (and sometimes heartbreaking) personal story of why they do what they do.

So I wouldn't put too much on family background/ethnicity.  At least not in an obvious way; the truth is probably a lot more complicated.

Title: Re: OIT may not produce lasting effects?
Post by: twinturbo on August 20, 2013, 09:03:48 AM
OK, I guess you use the word background to mean ethnicity? I don't. Background to me is full context including profession.

When I say background I mean specifically the following:

Medicinal training in both Chinese medicine and Western MD who have worked at the large metropolitan hospitals in mainland China that incorporate BOTH in treatment. We've had family members we've sent to them for treatment we couldn't get in the US. Shanghai, specifically. We also have friends stateside who have worked the bigger hospitals in Beijing and obviously Shanghai which is how we got a connection in.

Those connections, the doctors in the large metropolitan mainland hospitals are a specific echelon. I know you all Dr. Li so I use her as an example.

That's a rare background statistically to find strictly housed within research and/or the FDA focused on herbal medications. That would require the FDA taking herbs seriously and the wholly qualified person seeking such a position. However that came about it's a net positive.

The family friend MD who worked at the Shanghai hospital practices only as an MD in the US. The TCM facility I use locally have a similar professional profile from a Beijing hospital. They choose not to practice as MDs but as instructors for alt med practitioners here. I'm not sure if traditionally it has been difficult bureaucratically to try to practice both as an MD. Most of my circle of Asian American (DH and I are Asian for readers needing context) friends who became MDs or Pharm Ds, do not go anywhere near TCM even though everyone grew up with it or use it themselves.

You know in the old movie Ghostbusters where they say the streams can't cross? Usually they don't in USA, or it was discouraged by the structure of the system to cleave it.


Title: Re: OIT may not produce lasting effects?
Post by: CMdeux on August 20, 2013, 10:24:11 AM
Quote
OK, I guess you use the word background to mean ethnicity? I don't. Background to me is full context including profession.

I don't either-- I meant exactly what you did about that.  :)  I specified 'ethnicity' because there is probably a temptation to refer to a first generation American with extended family in New Delhi, who, for example, takes an interest in Ayurvedic medicinal compounding... as... well, someone who is interested BECAUSE of ethnicity, and that simply isn't the whole story a lot of the time-- in my experience.

I'm just glad that we're finally getting to a point (in N. America) where people feel that they can come out of the closet, so to speak.

It's been difficult until fairly recently-- allopathic, North American medical training taught doctors that all Ayurvedic/TCM practices were bunkum, and far too many TCM practitioners were afraid of (? not exactly what it is, I realize, but there IS a barrier) toward scientific validation of those practices, and toward the pill-pushing western side of things.  Not all Ayurvedic/TCM/ethnobotanical treatment is empirically valid.  But some of it sure is.  Then again, not all western medicine is about pill-popping, either-- but some of IT is. 


All medical practice is an unfortunate tangle of placebo effect and mind-body interactions alongside of clinically meaningful interventions that work regardless of the patient's beliefs.   The allopathic side of things isn't always as critical as IT needs to be, either.  It's a structural problem, but what is ironic (in my own experience as a researcher looking at both fields) is that TCM sneers at allopathic medicine for its wholesale dismissal of placebo as a valid practice (and they are probably right), but at the same time, allopathic practice does quite often use what amounts to placebo effect.  It's all in how the effect is examined, and in what sort of control groups you select.  How to define "effective" basically, since it is by definition a relative term.

We all run into that re: challenges and outgrowing-- what exactly constitutes "tolerance" anyway??  Is is "ad libitum?"  Or a single serving?  Something less than that?  Only in some forms (fully heat-denatured)?  Compared with WHAT?    That's always the most important (and vexing) question.  It's very seldom black and white.





Title: Re: OIT may not produce lasting effects?
Post by: twinturbo on August 20, 2013, 10:54:01 AM
Sort of. I'm used to having to verify my sources within my 'community' where we have a vetting process based on our intercontinental social network. Sometimes this leads to a store front with no English running on cash only. Sounds shady, right? But I go through a different vetting process where the certifications that have meaning to me, to us, ironically have no paper equivalent by the national system we have in place here in USA. On paper the type of person who looks qualified here takes some NP or is a chiropractor with some a couple community college courses in acupressure.

It has to be someone that was well established within the medical system elsewhere, not someone whose entry into medicine was US med school and then pursued something tied to ancestral cultural medicines. In a very narrow category I would describe it to a select few who are international researches having an equally maintained career researching in collaboration where TCM isn't TCM but part of an openly integrated approach without the hipster granola co-option. They still have a hand in the game so to speak because they never left the system, only expanded upon it with additional resources, new collaborators.

Found him. This FDA guy. He was one of the moderators for the 2010 East-West Symposium organized by Mt. Sinai for the US-Asia-Europe group of botanicals in asthma and allergy.

Quote
Jinhui Dou, Ph.D.
Pharmacognosy and Pharmacology Reviewer
jinhui.dou@fda.hhs.gov
Phone: (301) 796-1062
Dr. Jin-Hui Dou joined the Botanical Review Team as the pharmacognosy reviewer in July 2002.  Dr. Dou is uniquely qualified for this position having earned his B.Pharm, and M.S. at the Bejing University of Chinese Medicine and his Ph.D. at the University of Mississippi.  In addition to his formal training, Dr. Dou has extensive practical experience in the areas of medicinal plant biology, pharmacology of herbal preparations, and clinical uses of botanical products.
Title: Re: OIT may not produce lasting effects?
Post by: CMdeux on August 20, 2013, 12:27:16 PM
I do think, though, that there is a real risk of wholesale legitimizing happening as this process transpires, though-- because while someone who has a long history of practical TCM experience may be legitimately an expert...

someone who just happens to take a couple of accupressure classes and set themselves up... does not.

And really, no matter how much anecdotal evidence you collect as an individual practitioner, it simply isn't the same thing as data that rigorously validates your hypothesis.  Unfortunately, too few clinicians genuinely understand the distinction.

I'm okay with anecdote and speculative ideas in medical treatment out on the edge.  But I'm mightily uncomfortable with practice standards written from them.

This is the problem that I've witnessed:  when NCCAM was built as a funding agency, it was intended to fund things that were "known" anecdotally but were not scientifically validated, or well-understood mechanistically.  Things like pain management with accupuncture, herbal TCM, etc.    Then, though, the mission expanded exponentially when "practitioners" started figuring out that they could "study" things like NAET and BioSET using that same pool of funding.  {sigh}  Now all of it gets lumped together as "alternative but probably something to it, since so many people seem to think so..."  which of course is no kind of validation at all.


Basically, it begs the question-- how does anyone know that FAHF-2 is worthwhile and NAET isn't?  Well, experience suggests that this is so, I get that part... TCM has a few thousand years of practice behind it.  But so did bloodletting.   Bottom line is that it boils down to a litmus test of "does this fit within the known natural laws governing the natural world and what we understand of it?"  In the case of FAHF-2, it's an obvious "Sure-- completely possible."  NAET?  That would be a big old NO, thank-you-very-much.  COULD it be a placebo effect at work?  Yes-- in both instances.

Bu the answer to that first question means that FAHF-2 deserves funding for research and NAET probably does not.  The problem is that the agency doing most of this funding isn't asking that question very well.  IMO.


Title: Re: OIT may not produce lasting effects?
Post by: CMdeux on August 20, 2013, 12:37:44 PM
It is also a serious shame-- IMO, again-- that the west has more or less lost its traditional herbal knowledge.  We chose (culturally) about 400 years ago to regard those people with that knowledge as "uneducated" relative to a newly defined set of emerging standards of education via a university experience.    It also didn't help that a lot of practitioners were.... female.  (Midwives, specifically.)

The trouble is that pharmacognosy/ethnopharmacology was a genuinely sophisticated specialty field with real local experts (apothecaries and herb-women or midwives) much the way TCM continues to be. 

So most of the west has no real idea how to utilize its native plants which have pharmacological activity-- though such knowledge DID exist once.  A lot of it was oral, and has been lost.  On purpose-- because it wasn't something that "fit" well with the emerging ideals of a male-dominated educated "professional" class.

A look at the histories of digoxin and valium is ample demonstration of the kind of nuanced, very sophisticated understanding that I'm talking about.  Now imagine that there are THOUSANDS of other drugs that some Parisian apothecary or Irish midwife in 1500 would have known about... but we don't because those things were proprietary information at the time.

Anyway.  There ARE people in pharmacognosy in North America and in Europe who seek out primary sources from theses regions in order to harvest information from them.  But the process is different than it is with Ayurvedic or TCM practices and remedies, because in the latter two instances, there are living, traditional practitioners to ASK.



Title: Re: OIT may not produce lasting effects?
Post by: twinturbo on August 20, 2013, 12:47:33 PM
This was 2013. I'll keep cyberstalking him to see if his Guidelines for Botanical Drug Development is published somewhere. Most likely for the rest of us since you're likely to know anyhow. I'm going through .edu backchannels to see if I can get the official USFDA Guidelines (etc.) in print from Jinhui Dou/FDA if one were to approach as a university botanical researcher.

Track C

C4 Botanical Drugs: Navigating an Emerging BioPharma Pipeline

Track:   IP Best Practices
Target Audience:   Intermediate
Moderator:   Andrew K. Gonsalves, Esq., Heslin Rothenberg Farley & Mesiti PC
Speakers:   Allyson M. Best, M.B.A., University of Mississippi
    Jinhui Dou, Ph.D. , U.S. Food and Drug Administration


Quote
The botanical prescription drug industry is in its infancy, but there are signs that it is trending upward. In 2006, the U.S. Food and Drug Administration (FDA) approved the first new botanical drug under the FDA’s industry guidelines for botanical drug products. This approval has helped to stimulate more interest in the development of botanical products for therapeutic uses. Early-stage university research will be critical in advancing this technology. As this market matures, we can expect a greater interest in the procurement, management and licensing of patents covering botanical products derived from university-based research. However, commercialization of botanical products includes unique challenges. Unlike small molecule drugs, botanical drugs are typically plant extracts containing a mixture of components. At times, the active compounds in these plant extracts have not been identified or fully characterized. Panelists will discuss the intellectual property, regulatory, and licensing hurdles that university technology transfer offices may face in partnering with industry to commercialize botanical prescription drug innovations. Panelists will also discuss lessons learned from the licensing and launching of actual botanical dietary supplement products derived from university research.


A video overview

http://www.integrativeonc.org/index.php/past-conferences-sec/shanghai-international-symposium/108-regulations-panel

And the panel on Sinai's 2010 East-West Symposium http://www.mountsinai.org/vgn_lnk/Regular%20Content/File/Faculty%20Profile%20Pdfs/EastWestSymposia_agenda.pdf. I never looked much at the Italian or Austrian contribution because the FDA trials concentrate on FAHF-2.
Title: Re: OIT may not produce lasting effects?
Post by: LinksEtc on October 01, 2013, 01:42:48 PM
TT,

This link is for you  :)

http://www.asthmaallergieschildren.com/2013/10/01/chinese-medicine-minus-the-enigma/
Title: Re: OIT may not produce lasting effects?
Post by: twinturbo on October 01, 2013, 01:57:05 PM
Any idea of which Henry Ehrlich this would be? If it's the Professor Emeritus in hard science my confidence is more moderate. The philosopher's NY Times piece, however, is exactly the sort of perspective I want to be phased out and replaced in the entire discussion. He's so off it irritates me reading it. Jeez, it's not like we don't use Panadol or vaccinations. But I guess that plays out better for readership than an FDA bureaucrat discussing real barriers to regulating formulations.

Not you links, it's not you.
Title: Re: OIT may not produce lasting effects?
Post by: LinksEtc on October 01, 2013, 02:10:47 PM
Not you links, it's not you.

That subject ... I automatically think of you ... whether you like/agree with the content - I don't take offense  :heart:
Title: Re: OIT may not produce lasting effects?
Post by: twinturbo on October 01, 2013, 02:34:20 PM
Good.

Maybe I should detail what a visit with Dr. Li is like to illustrate what happens even inside a private TCM clinic outside the FDA purview.

It gets routed through Mt. Sinai. In order to be seen you must get a full standard blood work up including (if I remember correctly) complete blood count, IgE levels total and food specific. She reviews the blood work, and in my case she was the first to diagnose my single-line neutrophil deficiency correctly which was later confirmed at a second opinion appointment at Harvard Med.

We didn't talk about feng shui, other supplements, chi, nothing of that sort. In TCM herbs it's common for the doc to want you to stay away from certain foods or drink often times because of its diuretic effects. She didn't even bring that up - I did, and even then she had no concerns.

Now, she did sneak some acupuncture on me but that was unrelated. She heard how hectic life circumstances were so she wanted me to chill the heck out. For the record none of our family use acupuncture we don't like having the skin punctured. Moral of the story is we walked a firm medical line even with an herbal formula. There was nothing mystical about it and THAT is how it usually rolls.
Title: Re: OIT may not produce lasting effects?
Post by: booandbrimom on October 02, 2013, 07:13:51 AM
Any idea of which Henry Ehrlich this would be?

He's the brother of the doctor who writes for that site. He did interview me for the book. Of course, he didn't TELL me he was writing a book (I assumed it was for his web site or I wouldn't have done it) and he was horribly condescending in his emails to me (making fun of me because i use a pseudonym)...but I guess I'll be in it. In some twisted form.

Can't wait.  ~)
Title: Re: OIT may not produce lasting effects?
Post by: CMdeux on October 02, 2013, 08:51:44 AM
{cringe}

Yeah, hey-- who WOULDN'T use their real name, location, and post their child(ren)'s medical information publicly?

 
Title: Re: OIT may not produce lasting effects?
Post by: twinturbo on October 02, 2013, 09:42:14 AM
Alright, that sounds more like the garbage I'm used to in this area. I think I may slide her an email to see if she's even aware of it.
Title: Re: OIT may not produce lasting effects?
Post by: GoingNuts on October 02, 2013, 05:47:15 PM
Recently someone posted on our local support group board (someone I've never met, which is not unusual since we haven't met in person in years) that her DD who had been successfully going through OIT anaphylaxed from a trace amount.  She had been up to 3 peanut M&M's a day, and got some cross-contam baked goods by mistake.

Quite disheartening.
Title: Re: OIT may not produce lasting effects?
Post by: CMdeux on October 02, 2013, 07:05:59 PM
Wow-- that is just horrifying.

As you know, though, we're all about the details...

was this someone who was still dosing daily?  Taking antihistamines?  Ill?  Exercise a factor?

Title: Re: OIT may not produce lasting effects?
Post by: GoingNuts on October 02, 2013, 07:33:21 PM
She actually reacted twice - first time exercise may have been a factor, as she had been on a long walk after her nightly dose. Second time, no.

This is a teen , BTW, who had no memory of previous Ana reactions as a small child. She had been reaction-free for quite some time.  :-[
Title: Re: OIT may not produce lasting effects?
Post by: LinksEtc on October 10, 2013, 11:47:39 AM
"The Hunt for a Food Allergy Cure: Where Is It Heading?"
http://allergicliving.com/index.php/2013/10/10/the-hunt-for-a-food-allergy-cure-where-is-it-heading/?page=1
Title: Re: OIT may not produce lasting effects?
Post by: hedgehog on October 10, 2013, 03:10:06 PM
Just seeing this now.  Wow, GN, three peanut M&Ms a day is what DS has been taking for over a year now.  He has been doing just fine, but hearing this is scary indeed. 
Title: Re: OIT may not produce lasting effects?
Post by: aggiedog on October 11, 2013, 03:30:54 PM
Scary. FWIW, our allergist does not recommend PN M&M's because the sizes vary so much.  We do 1 TBSP PB or 2 tsp flavored PB daily.

Dd, who had been stable for 2 years, had a reaction that probably should have been epi'd after one of her doses about 6 months ago.  No exercise, but her allergy cup was full, so to speak, after spending all weekend outside.  Couple that with breaks in her gums from her braces and she reacted immediately after her dose one night.
Title: Re: OIT may not produce lasting effects?
Post by: lakeswimr on October 11, 2013, 05:56:13 PM
The trace dose person--I wonder if she might have an as of yet undiagnosed nut allergy to some less common nut and reacted to that rather than peanut xcontam in the baked goods. 
Title: Re: OIT may not produce lasting effects?
Post by: hedgehog on October 12, 2013, 06:37:39 AM
That would make more sense than reacting to traces of something eaten in larger than trace quantities.  I have always thought if DS does redevelop the allergy, he would react to his maintenance dose.  Reacting to a trace amount while not reacting to the dose does not make sense.
Title: Re: OIT may not produce lasting effects?
Post by: lakeswimr on October 12, 2013, 03:31:59 PM
I don't think it makes sense, either.  I think it could happen, perhaps.  My son passed a food challenge and then reacted to small, not trace, amounts of the food and now has a lower threshold for the food.  Very weird.  His threshold level changed wildly in the past 7 years since he had ana to that food, went on the pass a challenge, reacted to tiny amounts, and now can eat more than the tiny amounts that cased that reaction.  We have been told and tend to think that we either grow into or grow out of allergies but my son shows it isn't always a straight line or always that simple.

But in any case I do not think there is any way they can say with certainty that the child reacted to trace peanut.  How can they know it was for sure PEANUT.  A lot of peanut allergic kids are also allergic to one or more tree nuts.  There are some tree nuts that are not commonly used by manufacturers.  I know of several kids who didn't find out they were allergic to a more rarely used nut until they were much older because they just hand't ever eaten something with that particular tree nut in it.  So, I will sit undecided on that story for now. 
Title: Re: OIT may not produce lasting effects?
Post by: Gray on October 12, 2013, 10:12:16 PM
My son passed a food challenge and then reacted to small, not trace, amounts of the food and now has a lower threshold for the food.  Very weird.  His threshold level changed wildly in the past 7 years since he had ana to that food, went on the pass a challenge, reacted to tiny amounts, and now can eat more than the tiny amounts that cased that reaction.  We have been told and tend to think that we either grow into or grow out of allergies but my son shows it isn't always a straight line or always that simple.

 :yes:  I agree.