reallergic peanut allergy update

jovie had her retesting done on jan 18th. it confirmed severe (level 3) peanut allergy.

so, just like that, we are back at square one and i am left confused and wondering how she could have truly been over the allergy and is now right back where she was. her allergist says he has only read of such cases, but it does happen. i wish i'd never given her any peanut and just left well enough alone when he told me she was no longer allergic. at least now she'd be walking around w/ a little bit of a buffer for accidental exposures. i mean, if it took 3 or 4 instances of directly and intentionally eating almost a tablespoon of peanut butter, she could have had quite a few tiny accidental exposures before she would be immediately anaphylactic again. now i've used up that buffer b/c i gave that much to her every single week.

and if she overcame it with 4 years of total elimination of peanuts once, can i expect that with 4 more years of avoidance, she might outgrow it again? her dr. says no, that it is a lifelong allergy now...but can he really know for sure? i'm not looking for my child to someday be able to eat peanut butter on a regular basis, i just want that buffer back - so she isn't always one crumb away from choking to death from her airway closing up. i'd give anything just for a little buffer again.

one good thing to come of it, however, is that her dr. discussed the case with his fellow allergists in their practice and mentioned my recommendation that all severe allergy cases should have TWO food challenges in their office before being declared "cured" of their allergy, since the 1st exposure would count as the (new) sensitizing exposure in a child that had outgrown an allergy to the offending food. the next exposure would really be the telltale one. had we been in a controlled environment and looking for it, the dr. would have caught jovie's 1st reaction at her 2nd exposure to peanuts. we were very lucky, her most recent (anaphylactic) reaction could have been much worse or even fatal.

i didn't think the dr. would take my suggestion seriously as it is evidently so rare for any person to become re-allergic like this - so soon and so seriously - but her allergist told me they have changed their policy at their practice to adopt my suggestion and it's already in practice! i LOVE a dr. who is open to learning from his patients!! it makes me feel like we are truly in the same boat and working as a team - we are all learning as we go along and open to listening to each other's viewpoints.

the next step is meeting with her school about going peanut free, which i am hoping will go smoothly as our high school already is and it seems pretty inevitable anyway. so far the 504 coordinator has been nothing but helpful and concerned, so i am encouraged.

i am still left pondering why my children always seem to be the ones that never fit in w/ the way things usually work. if there's a rare side effect, it happens to them. if there's a "variation of normal", it's them. if there's a "one in a ten/hundred/thousand/ten thousand" chance, it happens to my kids. at times it's made me really insecure, self-conscious, be called a 'munchausen-by-proxy mama' or even ignore or downplay my children's symptoms b/c i don't quite believe it myself or want to be "that mom" who always has the weird issues.

but i'm beginning to formulate a theory about what might be behind it all and am putting my thoughts together for another post all about it - stay tuned! :-)


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