Living with Food Allergies, 2013 and on

[CMdeux]

We've kind of shifted gears in our thinking re: baked egg at this point, Grey-- we used to think about all that COULD change with "tolerance" (however one defines that), and think about how to push dosing up into that range so that we could "get there" someday...

but then we realized over a period of a few years that the changes that we already have are really amazing.

We don't worry about cross-contamination any more.


No-- let me repeat that.


We. don't. worry. about. cross. contamination. any. more.

We buy whatever pasta we like.  We allow restaurant meals that would have been UNTHINKABLE before.  We don't worry about contact with... salad dressings, potato salad, chickens, chicken FEED, animal food, hair products, art supplies, baked breads, pizza crusts...

It's amazing how much this has changed for us when we stopped and thought about it.  My dd can actually go OUT to a restaurant with her friends.  She can get a flu shot each year.  She is going to be able to have a chicken of her own.  While I know that seems like a peculiar way to "live the dream" and y'all can mock us all you like, this is like having a fairy godmother wave a wand over DD and tell her that she CAN go to the ball after all.   SHE feels like she won the darned lottery for being able to have a CHICKEN. 

Quality of life is a highly idiosyncratic measurement, basically. 

So yeah, if she isn't ever able to tolerate eggs in her diet-- SO WHAT.  I would never want to risk what we've gained.   

[Macabre]

PurpleCat I'm glad your dd had a good time.

DS' first homecoming dance was a letdown to him.  There were many, many students grinding, making out, etc.  He and his friends went around making fun of them "shooting" a "documentary" about them (fake camera, fake mike, real, out loud dialogue). 

This year he and his group (boys and girls) got dressed up, took pictures, ate at someone's house, went bowling, then had a bonfire.  And the host kid for dinner had exact schedules printed up for parents.    He had a much better time this year, and they didn't even go near the school.  I did worry about allergy stuff, though.

[Gray]

I find myself shaking my head  to your post CM and cracking up about the chicken (which btw, I totally appreciate as I think only an allergy parent would).  We are in a similar situation, minus the chicken of course  .

I am ok with our situation indefinitely, but I'm also fine with whatever the allergist wants to try as long as there's not a significant risk of having to avoid again.  If she said avoid, I would, but I hope it doesn't come to that.

There are some differences:  your dd has a more severe rxn history, different allergens, my dd at least almost passed an OFC (it was written as a pass).  Also different ages of our dd's.

I'm glad I've got people to compare notes with.


Kind of unrelated, but it seems the school is being much stricter than I requested - whatever, I'd rather they do that than the opposite.  We have a great school nurse.



@PurpleCat - Congrats!

[jschwab]

I'm new here but I feel like I can finally vent to people who understand. If I see another inspirational article in Living Without about someone with a serious life threatening food allergy who "chooses not to live in fear" and travels to remote regions armed with an allergy card and phrasebook and is fine, I am going to puke.

[GingerPye]

LOL, oh, no kidding!

[twinturbo]

I'm new here but I feel like I can finally vent to people who understand. If I see another inspirational article in Living Without about someone with a serious life threatening food allergy who "chooses not to live in fear" and travels to remote regions armed with an allergy card and phrasebook and is fine, I am going to puke.

Truth. Refreshing, unadulterated truth.

[CMdeux]

Yup-- here, the testimonials are about those who travel to amazing not-too-remote locations armed with seventeen epipens, three different dictionaries, a smart phone (for Google translate) and an extra suitcase loaded with safe shelf-stable food that cost more than the entire contents of the OTHER bags.  And by "other bags" I mean those of the all of other passengers on the trans-continental flight, which one required sedation to board... only to realize that no, if I'm sedated I might not be alert enough to head off disaster at 32,000 ft over nothing but open water....




Yeah, reality is a little different if you happen to have a threshold lower than the 50th percentile. 

[YouKnowWho]

LOL I celebrated our trip to Helen, GA last June as being the first trip that didn't involve a reaction, vomit or a combination of the two.

We successfully navigated a driving trip to NJ (two days there, two days back) with only one child getting car sick (apparently letting him have two glasses of McD's sweet tea and a McGriddle was a bad idea) and no reactions!

Much different than a trip where DS1 christened the back of the brand new car coming back from Legoland with the start of a stomach bug.

Or the trip to St. Louis where we were told in Outback that the honey mustard dressing was safe for his egg/gluten allergy, had a rxn and then told oh but it just has three ingredients honey, mustard and mayo.  Ummm - those are not three ingredients.  DS1 spent the better part of our trip in the restroom figuring out which end to back up.  Stomach bug or allergy fall out, I don't know.

[SilverLining]

Yesterday I was at school trying to find the class for a parent-teacher interview, when my dell-phone rang.  It was Ernie's girlfriend.  At her work, there is something coming up, which she is supposed to provide cupcakes for.  (Seriously....it never ends) and she knows that one of the employees is allergic to peanuts.  So she called me to see if a particular brand is safe.

My brain does not switch gears so fast, lol.  So I started asking her questions trying to place the brand. Finally, had to visualize this forum, and it all fell into place.

She had a product I would feel safe purchasing.

[SilverLining]

well doesn't that just figure.

It's cold enough there is frost in the morning.  It's cold enough we've had to run our furnace.

So....why was there a wasp in my son's room?  Crawling on the costume he's working on.  And he's been working on it for weeks.  Since he's not going out, he's dressing up to hand out treats, so his costume is NOT winter weather safe.  A lot of cardboard.

I grabbed the shirt, rolled it up and took it into the backyard.  The wasp was DEFINITELY still there when I unrolled it.  But, there's very little light, and I lost sight for a second.  I don't know if it flew away, fell off the table, or hid within the shirt.  I shook it, and I had a flashlight.  But without being POSITIVE it was off the shirt, I didn't dare bring it back in.

So now, his shirt, with lots of work and cardboard is sitting in the yard until morning.

I feel bad.  Nothing I could do.  I searched until I was frozen.  Searched in the cold dark.

For anyone who doesn't know me, this son is allergic to insects.  We don't know specifically which ones because he was to young to describe it when he got bit and a year later stung, and the doctor refuses to test. Unlike foods, there's no reason to not avoid getting bit and stung by all of them.

[CMdeux]

Oh, Silver-- I really hope that the costume is okay.   

[SilverLining]

No frost, so it seems OK.

I searched and could not find the wasp.  I've had the stuff hanging in the house about 5 hours now.

[jschwab]

I joined an adult allergy group that seemed good and one of the responses I got to my introduction was a suggestion that if I, perhaps, healed my leaky gut I could eat all my allergens again.  I actually did follow a gut-healing type diet with my celiac husband before I got allergies so this advice make me want to throw things. What do you say to people who say stuff like that?

[YouKnowWho]

Ask them why they are there if they healed their leaky guts 

[jschwab]

LOL . My husband has severe gluten intolerance, maybe celiac (he had ataxia that was worsening before he went gluten free). Even with that, we were always very respectful of the difference between a true food allergy and other issues with foods. He never, ever told anyone he had an allergy even though even a crumb would sicken him for a week. I am ecumenical about food problems and don't mind talking about everyone's issues in the same breath but, seriously, there is a difference.