It's just so sad, how isolating this kind of thing can be-- particularly when inclusive practices just aren't that hard.
I'm sorry to hear that Lori's son has also had the experience of not being "happy" enough with platitudes from physicians. That's really terrible that physicians would impose that on a child. HG+ kids seem to have a real NEED to own their medical conditions at a young age, and that includes reality, even when it's harsh or hard to process. My DD can talk to you about cytokine storming, and why IgE measurements aren't indicative of fatality risk, etc. etc. She knows why teenaged girls are at highest risk of death, and she is self-reflective enough to realize that she feels a lot of those risk factors keenly. This is very hard, identifying with people who died because they made errors in judgment, but it's what she personally needs to do. She does NOT need to be "hopeful" about outgrowing or an eventual treatment, because we're on our third round of "five years" at this point (insider joke, that-- it's what we all get told at diagnosis... "Oh, not to worry! There is such rapid advancement in research... it won't be more than five years and there will be a cure"), by my count.
I'm not holding my breath-- but we do still follow the research with fairly avid interest, and we've been aggressive about food challenges, etc. I definitely don't like it when others (who know little about it) push a variety of "treatments" or "cures" as if we are CHOOSING to continue to live such a limited existence... I guess they all think I'm a Munchausen mom. ::sigh::
I mention that not because it's about food allergies... but because I suspect very strongly that this is yet another thing which is fairly universal about disability.
I'm so grateful that her allergist supports her interest and engagement without brushing her off or labeling her as "over-anxious." That has been a real lifeline.
