Dd's OIT for PA, an update

[aggiedog]

I think my old thread is in the archived board, so I'm starting a new one.  For those that are new to the story, dd had contact ana PA only and underwent OIT in Dallas with Dr. Wasserman's clinic 3 1/2 years ago. She did great with only one moderate reaction the entire time we were up dosing, when we switched to whole PN's.  She's been on 1/2 tbsp PB daily maintenance dose for 2 years now. 

At the end of the updosing, repeat labs showed a first time ever walnut and pecan allergy (labs immediately prior to treatment had been negative to everything but PN.) She'd eaten baked pecans in the past with absolutely no problem, and not alot of opportunity to eat raw ones.  Since then, we've had a few episodes of itchy tongue with hidden raw pecans and walnuts.  Honestly, we haven't fed her any baked ones on purpose, so I'm not sure if she'd react.

She's had itchy tongue symptoms two days in a row to certain cheeses from an organic, artisanal cheese place.  Looking into it, I think it was due to the probable high histamine content of those types of cheeses - alpine cheeses can end up that way sometimes.  Could have been x-con also, though, since this place also has a pecan pesto they put on some sandwiches.

She's had one PB reaction, just recently, involving swelling of her eyelids about an hour after her regular PB dose.  She has NEVER reacted since she started maintenance dosing.  She had been outside all day all weekend, and our pollen counts are thru the roof right now, and she had a raw spot on her gums from her braces.  During up dosing we learned that if the PB sat too long against her gums she'd have localized swelling. So, too much direct exposure +/-  an immune system that had been overloaded?  Decreased tolerance?  During that episode she also had a mild, infrequent little cough.  No, I didn't epi her, but thought about it.  No problems with the next day's dose or any since.

She has an appointment with the allergist in 2 weeks.  I just got her labwork back.  Here it is:

PN          0.64  class 1
Pecan     6.64  class 3
Walnut   7.20  class 3

Sesame  0.65  class 1
Cashew  0.44   class 1
Pistachio 0.66  class 1
Hazelnut 0.83  class 2
Almond  <0.35
Coconut <0.35

I'm pretty sure all those other nuts have always been <0.35.  Ergh.  She's had Nutella in the past without a problem, but we haven't had any in a few months.  I'm going to get her some and see what happens.  She's also had hummus many, many times without issue.

Much to discuss with the allergist.

[CMdeux]

Ugh.... my crystal ball sees many challenges in your future.   


Bummer-- hopefully all of those only reflect elevations in IgE and not actual allergy.

(My DD's sesame numbers have been as high as 4-6, but she's not ever been sesame reactive that we're aware of.)

[twinturbo]

aggie, quick question.

You're an MD, right? How do you report having these reactions to maintenance doses to the allergist? I ask because there seems to be a credibility issue with allergists that it's 'impossible' to react after passing a challenge and properly following the OIT regimen. Do you think you report it like the we non-medical background patients do, or do you do it a little differently?

[aggiedog]

I think I'm bound to report it like a doctor, because at the least I'm using medical terminology.  For her lid swelling I'd actually say "moderate edema of both upper and lower lids without erythema or ecchymosis." 

That doesn't mean I'll be believed any more than a non-medical parent.  I had an ER doctor not believe my report of cyanosis in my dd either back when she was a baby.  I know cyanosis when I see it.

Dh is out of town.  He'd kill me if I give dd nutella or hummus this weekend and she had a reaction without him there.  I am NOT going to tell dd about the test results though.  I want to just feed it to her and see what she says.  She's not ever had cashews or pistachios that I'm aware of, so I won't try those at home.  I will probably try the hummus and nutella prior to her appointment though, so I can go armed with that experience, however it turns out.

She currently doesn't have an allergist that knows her.  The doctor that was there for her entire up dosing left abruptly just as she was getting to maintenance.  She saw a PA that last visit and the other doctor that was in the clinic refused to come in and talk to dh about her test results.  That left such a bad taste with dh that that's the main reason we haven't been back since.  The doctor she sees next month will be new to her. So, consequently, we haven't told anyone about any of these reactions, not yet.

[Macabre]

Aggie, a few thoughts.

This could be correlation and not causation. It might be that she would have developed these allergies anyway, whether due to hormone chances or whatever.

Or it could be causation. There are cases of EE developing with OIT.

I assume it's Wasserman you are seeing soon. Has he seen this happen? 

[CMdeux]

Our allergist has cautioned us about EXACTLY this kind of situation with the Wasserman protocol all along, fwiw.

(He's one of the Burks-Sicherer, et al crowd trained at Sinai, btw, so he knows them all.  In his opinion, there is reason to think that kids who SEEM like unqualified "success" stories for OIT may still be at risk for sudden changes in tolerated dose.)


I won't post what he actually said about it.  But I think I've mentioned it to a handful of people here.  He has expressed real concern that wide rollout of this protocol is eventually going to have a few bad, bad outcomes because of this kind of thing, which seems to be most common with peanut desens.

That's just his perception, of course... and it is entirely possible that it reflects personal biases... but it also seems to be an opinion shared by Wes Burks and High Sampson.

[aggiedog]

It wouldn't surprise me, or make me too upset, to find out if dd became less tolerant over time.  It bought her several years when she was younger, less able to self advocate, etc.  She was already contact ana, so if she goes back to even that level, well, we know how to deal with it.  And she has no desire to go out and eat tons of PN's.  She just wanted to safely go to sleepovers, etc.

I would be bummed if for some reason doing PN OIT increased her risk of other FA's.  All this TNA lab results have me concerned.

[CMdeux]

Yeah-- it's that risk of an unexpected and major reaction kind of out of nowhere that is the real concern, or at least that has been my understanding.


Hopefully it was just a too-full allergy cup thing. 

[twinturbo]

My oldest child's tree nut has been increasing from negative a few years ago. I know he had almond w/o problem at about 14 months and it was negative even after that. Yet now it's rising but I wonder if it's related to all the mango he eats. We haven't done any OIT.

[CMdeux]

Mango-almond would be an odd correlation, though.  More likely with pistachio or cashew.

[twinturbo]

Sorry, mind was elsewhere. I meant pistachio and cashew but almond also came up from negative as well.

[booandbrimom]

I will probably try the hummus and nutella prior to her appointment though, so I can go armed with that experience, however it turns out.

Just read an AAAAI tweet that said Nutella doesn't contain enough hazelnut protein for a true challenge. FYI.

On a positive note, my son's last hazelnut SPT was completely negative. We're waiting for the RAST, but the doctor was hopeful that the ~12 was truly just a pollen x-ref. Hopefully all your tree nut numbers will turn out to just be passing quirks.

[aggiedog]

Just read an AAAAI tweet that said Nutella doesn't contain enough hazelnut protein for a true challenge. FYI.

Wouldn't surprise.  Hazelnut is probably behind sugar and chocolate on the ingredient list.

[twinturbo]

It wouldn't surprise me, or make me too upset, to find out if dd became less tolerant over time.  It bought her several years when she was younger, less able to self advocate, etc.  She was already contact ana, so if she goes back to even that level, well, we know how to deal with it.  And she has no desire to go out and eat tons of PN's.  She just wanted to safely go to sleepovers, etc.

I really like this philosophy, aggie. Thank you for sharing that perspective it certainly is one to consider.


Unrelated thought, but has anyone ever noticed so many of the top allergens seem to be closely associated with reproductive stages? Eggs, milks, seeds/nuts. Is it that the proteins are more potent or concentrated or otherwise structured differently?

[booandbrimom]

Unrelated thought, but has anyone ever noticed so many of the top allergens seem to be closely associated with reproductive stages? Eggs, milks, seeds/nuts. Is it that the proteins are more potent or concentrated or otherwise structured differently?

The proteins that make it through gastric breakdown tend to have a reason why they need to be so stable. Seed pod proteins need to be able to pass through an animal's digestive tract.

Just read this the other day:

http://allergynotes.blogspot.com/2013/03/immunotherapy-scit-allergy-shots-and.html

There are 7 cross-reactive allergen families; tropomyosin, serum albumin, non-specific lipid transfer protrein, PR10, profilin, thaumatin-like protein, carbohydrate cross-reactive determinant.

A few of those are muscle/skeletal and a few are defensive proteins that ward off plant pathogens, but the others are reproductive.