Hmmmm ... I don't even know where to start ... I fear this will be quite convoluted ... ok ...
Do I have to say it? Is this issue worth giving up more of my family's privacy? I prefer posting/sharing info & links. Is it worth revisiting those old wounds that I would rather leave in the dust?
My dd passed an OFC to a food (other than peanut) and then had reactions when we introduced the food at home as instructed a few days later ... and she continued to have reactions for 6 months until we switched allergists & that new allergist reduced the dose.
How can I explain to you how horrible an experience that was? How can I/we get those allergists on the webinars to "hear", to "understand", to "believe" that reacting after a passed food challenge is in fact possible, that it happens?
The thing is, let's be honest ... we have a credibility issue here. Who is Links? I could be making this whole story up, right? Same with Lala ... yeah, if I remember correctly, she said
her son anaphylaxed after her allergists told her to keep feeding the food after the pass ... but, really, just anecdotes, right?
ok ... deep breath ... before anybody flips out ... I'm not going to name our former allergist here (I don't think that I told anybody in the online FA community even privately in pm's or emails her name) ... I am not going to name in this post where the OFC was done (I did tell a few people that privately) ... and, btw, there's nothing stopping me from naming names but ...
I am not looking to destroy reputations, I am not looking for revenge, I am not angry anymore ...
but mine is a story that likely would never be posted at FARE or KFA ... it's not pleasant ... but those webinars
again, how can we patients get the professional community to listen? I'm going to post a little bit of dd`s medical record here to give a sense of how bad things got (will "X" out some private info like name & allergen):
the gold standard is that she tolerated the xxx with the challenge. Mom is extremely anxious about this issue.
Mother is extremely tearful on the phone.
I am extremely frustrated and infuriated at the situation. Xxx passed a xxx challenge. There is no need for an epinephrine autoinjector in school. Nonetheless, we shall provide one for school with appropriate documentation for an epipen due to mom's request.
Epinephrine use is not going to be an issue. If anything, hives may ensue for which xxx will receive benadryl. Likelihood of xxx's theoretical risk of anaphylaxis to xxx (which she has passed) is negligible. Resources have been wasted to rectify this issue on multiple occasions.
That's all I'm going to post from the record here ... but maybe this shows a bit better why those webinars were enough to push me out of my recent lurking/reading mode ...
& to our former doc ... yeah, it didn't go so well between us & I can see now how I also contributed to that not being a good relationship ... you're probably a good doc ... you're human/I'm human ... you help a lot of patients ... you do a lot of good ... from what I've read, you docs can be kind of hard on yourselves ... this is not about attacking or judging ... this is about taking a bad situation and using it to help prevent future harm.
So my main question is how do we prevent something like this from happening to another FA family?
By not naming names ... the doc's, the hospital's, mine ... the above remains just my word which basically counts for nothing in terms of proof that this took place. So how do we close that gap between my word and the scientific literature in a way that is productive .... that does good ... not in a way that further hurts me or my former doc?