OIT may not produce lasting effects?

[twinturbo]

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.

[aggiedog]

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?

[CMdeux]

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.

[lakeswimr]

lakeswimr,

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

I think many of us are too hard on ourselves 

Good question.  I can't think of anything, really.  i tried my best.  Thanks. 

[ajasfolks2]

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

[CMdeux]

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.

[twinturbo]

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.

[Macabre]

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.

[booandbrimom]

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!)

[twinturbo]

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.

[CMdeux]

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.

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.

[Macabre]

I know what Burks told us at our last appointment:  this is not ready for prime time.

[CMdeux]

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.

[twinturbo]

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.

[CMdeux]

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."