Allergic or no???

[IowaMom]

I haven't been on here in a while; my allergy life has been a crazy roller coaster ride lately. But, I feel like those on this board may be the only ones who understand at this point.  Long story short, DD had first/only reaction at nearly 3 to PN (she just turned 11).  Her blood tests have always been low- under 2.0 except in 2012 when it jumped to 11.8 (which was one year after starting school).  However 2 blood tests after that have both been negative.   In May of last year, she had a completely negative component test.  She has also had 2 negative skin tests recently; most recent was in Sept 2016 and we were told that with all of the combined negative testing that she most certainly outgrew her allergy and an oral challenge was not necessary. That was completely unexpected- we thought for sure they would say we needed a challenge, but with DD's anxiety I also knew she wouldn't do one. This came from a University hospital- not an office allergist.  We started giving her "may contains" with no problems. She's had ice cream from dairy queen and other high risk foods lately. She does not want to try PN in any shape or form. So, we decided that if we were going to give up epi-pens, for her safety we needed to know for sure that she was no longer allergic. So, 3 weeks ago we put PN powder in a batch of brownies (without her knowledge- which goes against every moral fiber in my body). From online measurements, we figured that there should have been at least 2 PN equivalent in each brownie. She ate 4 brownies total over the weekend and had no symptoms whatsoever.  She has also eaten Ho Hos that "supposedly" have PN flour in them with no issues, though I'm not convinced that wasn't just a CYA statement. 

Fast forward to this past weekend.  We did the brownies again (again without her knowledge), because we want to have it in her diet just in case, but also for our peace of mind because this "allergy lifestyle" doesn't just go away overnight and I feel like I need a few times of this to be completely convinced.  My DD has always had a phobia of throwing up- resulting in severe panic attacks, and in the fall of last year caused school refusal. She has improved significantly lately, with no panic attack for at least 6 weeks.  This weekend she had over-eaten and said she was full, but proceeded to eat a brownie- standing up, with head bent down staring at her phone.  She sat down after she finished and said that she felt like something was stuck in her chest, and that she "threw up in her mouth" (reflux).  She did eat a hard corner piece.  This set off a full blown panic attack about throwing up.  Then she said that she didn't feel right ever since she at the brownie, and that it made her sick.  She had no other allergy- type symptoms, and as soon as she was able to calm down and the panic subsided, she was fine.  So....panic attack about throwing up, or possible allergic reaction??  Any advice/therapy lol/pep talk would be helpful at this point. Thank you!!

[rebekahc]

Wow, that is a tough situation.  I have no good advice for you.  Maybe the allergist would be willing to do one more test and if it's still negative, then assume it was just panic/anxiety and she has not redeveloped the allergy?

[name]

Double blind IOFC with a good doc, whether that good doc is Sam the local guru or a teaching hospital.  You need a single point of contact to own this from eval, testing, through DB IOFC. 

[CMdeux]

Man, that is a tough one...


either she has a threshold SO high that given her distaste for peanuts, she's probably never going to be at real risk anyway, or this was almost certainly anxiety-not-allergy...

I mean, that's what I'd be thinking.  (DD also now has an anxiety disorder, so I feel ya on this one... but.... she also anaphylaxed recently enough that it's pretty fresh in our minds what the difference looks like-- you might go take a look at my reaction post from a few weeks back-- this was not like anxiety in that it was picking up steam as it went, and that knowing that it might be peanut only let her be MORE sure that epinephrine wasn't such a bad idea.  She *had* been worried that it would 'set off a panic attack' to get epinephrine... when she thought it was only an egg reaction, that is.  Peanut XC warning on package changed her mind.)

Long story-- but the upshot is that epinephrine calmed her down because it stopped the reaction cold.

I second the desire to at least KNOW with an IOFC, no matter who is delivering it. 


Have you told her yet that she's already eaten amounts of pn that she SHOULD almost certainly have reacted to, were she still allergic?

What was her reaction history like, anyway-- I know that you've probably shared, long-long ago but was it systemic?  Anaphylactic?  Mild/local?  That changes the risk profile significantly, as you likely know. 

[IowaMom]

Thanks CM- I will certainly take a look at your post when I get home. I'm sorry to hear your DD had a reaction recently! As far as her reaction history there was only one reaction, at around age 3. The reaction involved her ears being fire engine red, with rashes on her knees, her belly button, and armpits. Nothing since with strict avoidance. Her ige has always been under 2 except for 2012 when it went up to 11.8,  but by 2014 was negative but with positive SPT. By Sept 2016 her ige, SPT and component testing was all negative.  My gut tells me it was anxiety because I know she ate so much food prior to the brownie and likely refluxed due to that and her position while eating it. And she had 4 "tainted" brownies three weeks prior. But when she said she felt sick when she started eating the brownie FA mom kicked in and combined with her saying she felt something stuck and felt sick it scared me. She never did throw up, and was fine once she calmed down. No other symptoms. She does know that she ate ho hos that are labeled as having PN flour because I told her after the fact and knows full well she's eating may contains. She just doesn't know about the brownies.

[PurpleCat]

 

What does your allergist think? 

[IowaMom]

PurpleCat I actually haven't emailed the allergist. I guess I feel like she would just say that we can do a challenge if we want to- she said that before.  But I know DD will not do it. Also, I would think she must have been pretty confident to tell us that we didn't need a challenge and could toss the epi's. I would think a doctor wouldn't want to accept that kind of liability unless they were 100% sure they were right. Our allergist is also not young- she's been dealing with FA kids for quite some time... Which is why I keep going back to it must have been anxiety. What I'm stuck on is that if she had those symptoms with a positive test, esp if I had known she'd eaten PN I prob would have epi'd her.   Also, with negative testing even if she was still allergic, what would be the likelihood of anaphylaxis?

My husband also brought up a good point- that we've been dealing with her severe anxiety/panic attacks for several months before, with the EXACT same symptoms, and never once thought to epi her.  But, we also knew she wasn't eating PN.  He is convinced it was the perfect storm and that it's sheer coincidence that it happened with the brownie.