Living with Food Allergies, 2013 and on

[ajasfolks2]

Have been thinking about this for quite awhile, but am just spitballing this post, so it may not be perfect.  Thinking more as I type . . .

And please excuse the Intro & preamble, but I must include . . .

My family's history:

Pre-kid I already had some preservative-induced asthma and allergy -- mostly sulfites . . .
1st child had what are now understood to be OBVIOUS signs of serious food intolerance and allergy (extreme colic, breastfed, serious excema, obvious reax to what I ate, reax to some legumes in early solids).  Then child had massive BIPHASIC ana reax to first KNOWN ingestion of peanut butter at 11 1/2 months old.  Child is now age 14+ and is ana to peanut, tree nuts (nearly all), plus possib garbanzo and mango.  Also has latex allergy.  There have been reactions over the years, to varying degrees, to include skin-contact anaphylaxis and many "mystery" reactions.



2nd child diagnosed with peanut and (some) tree nut life-threatening allergy, but does not have the history of the ana reax.  Also has OAS to many fruits (cherries, peaches to name a couple).  NOT having the ana reax history may be attributed to the vigilance and avoidance . . . or this child may not be allergic to ALL that are diagnosed and/or in the same manner as child #1.

~ ~ ~


Once upon a time on a board far, far away we (this group of posters and MORE) had an entire board section dedicated to "Living with Peanut Allergy" . . .   (with bow down and thanks to csc . . . )

Many of us are now into our second decade (or longer!) of LIVING with Food Allergies (plural as may of us are dealing with multiple food allergies) . . . so perhaps we've forgotten how hard it is to be newer (or "newbie" to this life).

Once upon a time MOST of us posted in that "Living with Peanut Allergy" section a WHOLE LOT (or elsewhere with related worries, concerns, challenges, questions).  And now many/most of us "oldbies" have the luxury of having settled into a more routine life with LTFA (life-threatening food allergy) and perhaps have fewer day-to-day challenges.

And, yes some facets of life with FOOD (not just peanut) allergy HAVE changed for the better:
>  Food label laws with some rules and regulation, however demonstrated and enforced;
>  ADA amendment and 504 OCR rulings as well as 504 knowledge for school-age;
>  Food allergy awareness in the food service sector;
>  Increased awareness in the public sector so far as basics as to LTFA;
>  Massive increase in information (ranging from accurate to crap) availability, what with Internet expansion and social networking.



BUT I keep coming back in my mind and my heart to a NEED for a thread or discussion that is just about the day-to-day . . . that might generate a dedicated thread to a particular topic, but that also just allows for mulling and brief discussion with links to send folks to related in depth discussion, if needed.

A place to vent sometimes as well, but not necessarily in Off Topic.

Because, for gosh sake, LIFE THREATENING FOOD ALLERGY venting is ON TOPIC here.


So.

Here's my proposal:

Let's have a "Living with Food Allergy" thread in MAIN and then have it dated and split if needed into some kind of increment -- monthly, yearly, whatever seems best.


But *I* believe this is needed by the community at large here -- not just the oldbies, but the many newbies who are looking for NON-Facebook musings and discussions.


Whew.

There, I've said it.  Perhaps with verbosity.

But I felt it needed to be said.

And started.

Thanks for reading . . .

~e


PS -- This isn't just aimed at helping the newbies . . . many of us have perhaps fallen into a place of "coping" and COMPLACENCY.  This life of LTFA is a STAGES type of endeavor.

PPS -- With everlasting thanks to my DH for around-the-table discussion on this topic . . . 

[Macabre]

Great idea.

[ajasfolks2]

Make it better.  Make it happen.  Make it last.

[TabiCat]

I'm not sure if this fits what you were envisioning for this thread but I'll start with a confession. I was thinking recently that as a family we have began to become TOO relaxed with living with food allergies. Yes I know that comfort zones change with our circumstances but I am not just talking about loosened comfort zone. We seem to be less AWARE and less intentional about food safety. That approach leads to a situation that is just flirting with tragedy. 

So as a family we are reevaluating things and this time DS (now 7) is playing a roll in that process. One of the truely sad things is the realization that this situation has been causing HIM anxiety. 

[ajasfolks2]

Thank you, Tabi !!

Magnificent first post for this thread!

[CMdeux]

I agree, Tabi-- sometimes you just have to shake yourself awake again if it's been a long time since you've had a major wake-up call.



Hmm...

Well, a couple of things this past week:

a) asthma flare seemed to be related to aerosol exposure which was tightly controlled and seemed tolerable at the time.... but it led to 24 hrs of yellow-zone asthma that needed pretty assertive management.  Rethinking again about those kinds of exposures.  Maybe just scrupulously worrying about contact isn't enough.  I hate to think that, because it makes things a lot more restrictive... but...


b) got the first EVER real apology for setting my DD up for a situation like that-- see a above.  Seriously.  A phone call from one of the organizers to apologize and say that it won't happen again.  This was a first in over ten years.  I'm still trying to think of a way to thank this person for apologizing like that-- because I think it's important to recognize and point out just how RARE and meaningful such apologies are.

c) opened a conversation about inclusion, also related to a and b above.  Hopefully, this will improve things in the long term with this youth organization.  I intend to tread carefully and pay it forward BIG here.   

[Macabre]

I cooked lunch today and used some refried black beans--a new to us brand of them. It looked safe for PA DS. And mostly fine for me. The ingredients listed "spices " and sesame can hide there. I typically don't use new foods with that labeling, but I think it was a low risk situation for sesame. I just don't find sesame used in Mexican food really.

So....I used them, but instead of rinsing and recycling the can right away, I made sure I left enough in the can that I could send it to FARRP if I had a reaction.

[StrangeSpot]

I am in such a strange spot in our 5 year food allergy journey.

Dd passed an IOFC, but is still having symptoms.  Just to give an example, a few months ago dd's tongue was itching so badly that she was crying and pleading with me to "make it stop".  I call the allergist's office (part of one of the best hospitals in the nation), and was told by the nurse that dd passed the challenge and that they do not consider her allergic.  My dh has made fun of me several times for watching her to make sure facial hives don't progress.  I have been labeled anxiety mom by the doctor for wanting to keep carrying the epi for a while.

We are getting a second opinion soon, but it's a very lonely place to be in.

I am thankful for this board.

[hezzier]

Just to give an example, a few months ago dd's tongue was itching so badly that she was crying and pleading with me to "make it stop".  I call the allergist's office (part of one of the best hospitals in the nation), and was told by the nurse that dd passed the challenge and that they do not consider her allergic.  My dh has made fun of me several times for watching her to make sure facial hives don't progress.  I have been labeled anxiety mom by the doctor for wanting to keep carrying the epi for a while.

This would cause me to have major anxiety.  I would be doing the same thing and carry the epi as well. 

[TabiCat]

I have been considering finding an allergist that is willing to give DS an oral challenge on PN. His allergist won't because of his RAST numbers but it feels odd to me that in 5 years he has had only 2 big reactions as a toddler and a handful of minor reactions to what we THINK was trace. Even his "big" reactions aren't what many of you have experienced.

I guess part of me wants to cling to the idea that he is a false positive or outgrown. His Dr say NO he is allergic. He does say he could be a good candidate for desensitization but he wants to see more long term results before recommending it.   

[ajasfolks2]

I sense there are many of us at potentially "second-guess" position so far as our allergist(s) or are ready to push to/for different (INDIVIDUALIZED!!) diagnosis and treatment. . . even while we advocate for minimal standards.


I'm not surprised based on the widely varying diagnosis and treatment of LTFA . . . not to mention the widely varying reactions and presentations of LTFA to begin with.

The "experts" don't have the "answers" . . . neither should we.

[hezzier]

The "experts" don't have the "answers" . . . neither should we.

True but still hard to swallow.

[Macabre]

We are in that middle ground for the next few days.  DS went to the allergist and had testing done for the first time since June of 2011 when his peanut score went higher than it ever had. Before that, it had steadily declined, almost to the point of being considered for an IOFC (in office food challenge). 

But now--we wait.  I keep checking the patient portal--where we'll be able to see the test results.

I'm in the land of "he could have totally outgrown. It's possible.  What if the score is really low now?"

Of course, that's likely not what will happen, but it's kind of nice thinking about the possibility.  In a week, I won't be in this land.  In six months I won't either.  It's now--that interesting in-between time.

It's kind of nice being here and thinking about what if.

[ajasfolks2]

I am also getting the sense that many of us are in the market for a new allergist . . . or at least additional opinions as to diagnosis and prognosis and potential therapies or treatments.



My family is.

[momma2boys]

Strangespot, I'm sorry you're going through this right now. It is sad that you are being treated this way by your dh and the Dr.   Trust you instincts and don't be bullied by them.