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Title: Dd's OIT for PA, an update
Post by: aggiedog on March 21, 2013, 10:20:50 AM
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.

Title: Re: Dd's OIT for PA, an update
Post by: CMdeux on March 21, 2013, 12:11:24 PM
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.)
Title: Re: Dd's OIT for PA, an update
Post by: twinturbo on March 21, 2013, 12:48:40 PM
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?
Title: Re: Dd's OIT for PA, an update
Post by: aggiedog on March 21, 2013, 01:15:39 PM
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.
Title: Re: Dd's OIT for PA, an update
Post by: Macabre on March 21, 2013, 01:21:00 PM
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? 
Title: Re: Dd's OIT for PA, an update
Post by: CMdeux on March 21, 2013, 01:30:08 PM
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.


Title: Re: Dd's OIT for PA, an update
Post by: aggiedog on March 21, 2013, 02:08:11 PM
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.
Title: Re: Dd's OIT for PA, an update
Post by: CMdeux on March 21, 2013, 02:20:51 PM
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. 
Title: Re: Dd's OIT for PA, an update
Post by: twinturbo on March 21, 2013, 02:21:29 PM
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.
Title: Re: Dd's OIT for PA, an update
Post by: CMdeux on March 21, 2013, 02:27:56 PM
Mango-almond would be an odd correlation, though.  More likely with pistachio or cashew.
Title: Re: Dd's OIT for PA, an update
Post by: twinturbo on March 21, 2013, 02:34:00 PM
Sorry, mind was elsewhere. I meant pistachio and cashew but almond also came up from negative as well.
Title: Re: Dd's OIT for PA, an update
Post by: booandbrimom on March 21, 2013, 07:57:14 PM
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.
Title: Re: Dd's OIT for PA, an update
Post by: aggiedog on March 21, 2013, 08:47:18 PM
Quote
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. :)
Title: Re: Dd's OIT for PA, an update
Post by: twinturbo on March 22, 2013, 07:26:11 AM
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?
Title: Re: Dd's OIT for PA, an update
Post by: booandbrimom on March 22, 2013, 04:24:17 PM
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.
Title: Re: Dd's OIT for PA, an update
Post by: aggiedog on April 02, 2013, 08:49:08 PM
Dd had her appointment today.  It went well.  Met the new allergist there.  He was young-ish, very nice, very down to earth.  Discussed dd's recent reaction to her PN dose.  He felt there was a good chance it was precipitated by being outside all day combined with the raw spot on her gums.  Given the reaction he recommended another year on maintenance.  If she is reaction free next year, we try a tolerance test.  No PN's for a month, then eat some.  He was very pleased with her PN numbers.  0.64 now, 5.60 in 2010.

Discussed her new TN numbers.  He thought it might be more of a cross reactivity with environmental allergens and more of an OAS type thing, which would be good since those allergies stay localized to the mouth.  Did a skin prick test for enviros.  Nada. She's not allergic to any of them.  Sooo, new TN allergies. He recommended complete avoidance.  I told dd before the appointment that her blood test showed new allergies but I wasn't sure they were correct since she ate Nutella (a third of a jar in one sitting 2 days ago) without a problem.  She told me her mouth was indeed a little itchy when she ate it.  Argh.  News to me.  So, no Nutella in our house.  No great loss, it has the nutritional value of marshmallows.  The doctor said TN's, fish, and shellfish were the most common late onset FA's.

He said 60-70% of OIT kids seem to grow into complete tolerance but there seems to be no rhyme or reason as to which kids it would be.   

So that's about it.  I really didn't pepper him with questions, and I wasn't really surprised by anything.  OAS and enviro allergies would have been nice, but it is what it is.
Title: Re: Dd's OIT for PA, an update
Post by: Macabre on April 02, 2013, 09:20:21 PM
Oh, wow. I'm sorry.  I thought of y'all today.
Title: Re: Dd's OIT for PA, an update
Post by: aggiedog on April 03, 2013, 06:40:13 AM
Thanks, Mac.  So far the TNA's are a nuisance more than anything.  Mildly itchy mouth with nothing more. Goes away with an antihistamine.  I think now it just means we have to go back to asking everyone what's in the food, and I guess reading labels more carefully.  You have the sesame allergy, right?  Any common hidden sources?

I also asked the doctor about portable antihistamines, since the fast melts, etc, were off the market.  He recommended Zyrtec and the like.  Small pills, easy to carry.  Made sense to me.
Title: Re: Dd's OIT for PA, an update
Post by: CMdeux on April 08, 2013, 11:06:52 AM
Just now seeing this.  Bummer.  Her reactivity to TN sounds similar to DH's.

He doesn't find it 'scary' to live with in the least.  Just annoying.  He also really just asks about high risk foods since his threshold is so high that anything else, he can 'figure it out' with little risk.

So he asks about:
desserts, cookies, chocolates, pastries, salad dressings and salads, and 'crust/crumb' coatings on meat, poultry, and fish.  That's about it.  He also just plain AVOIDS those items that are probably made with his allergen (walnut)-- carrot cake, baklava, and brownies-- no matter what he is told about them.
Title: Re: Dd's OIT for PA, an update
Post by: aggiedog on April 08, 2013, 07:54:18 PM
Yes, CM, that's what we've been doing with the pecans and walnuts.  I just now have this nagging feeling, wondering if I should be super anal about x-con, etc, in some effort to prevent the allergy from getting worse.  That may very well be me reverting to pre-OIT PA mode.  I don't seem to know what to to with an in-between sort of vigilance. 

I would much prefer to not be super anal.  That is alot of work and alot of stress, and life is pretty good right now.  Dd is going to a new week long sleepover camp this summer.  I'm trying to figure out how spooled up I need to get.  It will be at a college and she'll be eating in the cafeteria for much of it.  She's not an adventuresome eater and would be happy eating noodles 3 meals a day.
Title: Re: Dd's OIT for PA, an update
Post by: aggiedog on July 21, 2013, 04:55:53 PM
Dd got back yesterday from her camp. No problems with the food, had a blast.  We'll just keep plugging away with her daily PB and re-evaluate next year.  I'm stressing less about the TNA's, and just not buying things that are contain/may contains or feeding her obviously nutty food out and about.  Seems to be working for us.
Title: Re: Dd's OIT for PA, an update
Post by: aggiedog on July 29, 2013, 04:52:02 PM
A bit of an update on dd's non-PN FA's.  She's supposedly allergic to sesame and hazelnut.  This weekend she had fried rice with a good dose of sesame seeds and Nutella, all with not even a hint of a reaction.  While neither are huge doses, she does not seem to be all that sensitive at least.  FWIW.
Title: Re: Dd's OIT for PA, an update
Post by: Macabre on July 29, 2013, 05:06:16 PM
That's good, because with sesame, going off to camp would be more if a production.