Living with Food Allergies, 2013 and on

[CMdeux]

lmbo at last part.  Not funny but funny, KWIM?  That's totally what it would take which defeats the purpose of going in the first place.

I totally get it.

How did I eventually put it mentally?

Oh yeah--


Disclaimer:  {DD} may not be suitable as a starter project for experiential learning in food allergy and anaphylaxis.  Please be advised that this particular individual is recommended for advanced participants only.

  Still just as true as it was in 2004.

[notashrimpwimp]

Well-meaning advice, while appreciated, offers no protection.

Every day feels like Russian roulette when I turn beet red and develop hives within minutes of setting foot somewhere. Especially when I hadn't eaten anything prior due to having no appetite.

I wish it was due to something I ate because that would signal something I could change and prevent. Instead I exist on Benadryl, inhalers, and injectable epinephrine.

P.s. and wearing a mask apparently doesn't prevent worsening symptoms either.

[Linden]

Why oh why did I give a factual answer to the question, "What is DS eating these days?"  .  The only correct answer is a vague one like, "Oh lots of things" and change subject immediately.

I forgot that outside of allergy-land people believe in forcing a child to eat something if he or she doesn't like it.  Yeah that doesn't work in my world.

[Janelle205]

Why oh why did I give a factual answer to the question, "What is DS eating these days?"  .  The only correct answer is a vague one like, "Oh lots of things" and change subject immediately.

When I'm asked about myself, the general answer is: "Oh, lots of cardboard, and occasionally some styrofoam."

[Linden]

When I'm asked about myself, the general answer is: "Oh, lots of cardboard, and occasionally some styrofoam."

That is such a great answer!

[CMdeux]

I just love those days when you get texts like this from well-meaning friends:

"Wow-- see the news about probiotics and peanut allergies??"

{Not.... particularly...  but I can probably guess....  {sigh}   Goes to look at google news.}

http://www.telegraph.co.uk/news/worldnews/australiaandthepacific/australia/11374305/Fatal-peanut-allergies-could-be-cured-by-probiotic-bacteria-say-Australian-doctors.html


and more tellingly--

http://www.independent.co.uk/life-style/health-and-families/health-news/peanut-allergies-could-be-cured-as-trial-on-children-has-82-success-rate-with-probiotics-10008864.html

[spoiler]

A group of 28 peanut-allergic children aged up to 10 were given increased doses of the peanut protein every two weeks with a fixed amount of probiotic Lactobacillus rhamnosus that is said to equate to about 20kg of yoghurt a day

What, one wonders, did the placebo group get?  NOTHING. 

A total of 23 out of the 28 were able to include products made from peanuts into their diet and researchers in Victoria, Australia, concluded that the success rate was seven in nine.

A placebo group of another 28 children only had one case of success at the end of the trial.

Children who had severe reactions to peanuts were excluded from the test and test subjects suffered abdominal pain,vomiting and hives.

Hmph.  SO you cherry picked those MOST likely to outgrow, in other words, when you set up your study.  Nice.  [/spoiler]

23 Kids' peanut allergies were cured-- at least temporarily  <--- by far the most reserved of the headlines pulled up in the top 50 results 

OH.  THAT.



And so you respond, (having read the fine print-- the part which notes that one of the PLACEBO group also "outgrew" during the study period, conflating the results somewhat... and that there was no immunotherapy control group without probiotics, meaning that any claim of probiotic effect is, er-- speculative at best-- )


"Yes.  The study design and results are ratherr similar to oral immunotherapy trials which have been ongoing in the US for about 10yr.  Sadly it doesn't look all that earth shattering.  I think that the media locked onto it because of the popularity of the probiotic link."




"Bummer "

Me again;  "Yeah.  The fine print usually doesn't match the promise of the headlines, unfortunately."

Friend---

"we can keep hoping"


What?  No timeline??  "Five more years??"   





I'm also left wondering if there is anyone that I know who isn't completely doolally with respect to the vast and varied assortment of sheer overwhelming WOO in the world these days.  For heaven's sakes, this is a person who is a scientist and should recognize the flaws in this study's design. 

One group:  placebo (sham desensitization)-- most had no improvement in tolerance, and one had remission

Other group:  Probiotics and oral immunotherapy with peanut flour-- 80% had improved tolerance.



Um.  80% is not any different from the US studies that didn't roll probiotics into treatment.  This is what we would call a conflating variable in the study design.  AT BEST, there is a marginal (and non-significant) impact on efficacy of treatment.  There is also at this point NO way of knowing whether probiotics cause such treatment to "hold" better than not providing them does (and the answer to the latter is "for some patients, treatment must be ongoing or it fails").

SO.

I just wasted 15 minutes of my day on this.   

[CMdeux]

And WHY, after all these years, do I always have the profound sense of disenchantment with the person who does such a thing to me??  I'm disappointed-- and left wondering if they think that we live this way because we are choosing victimhood for our daughter or some such wackadoo thing??

It makes me ANGRY.

I have to wonder if someone with a spinal cord injury gets subjected to every wacky tin-foil-hat nerve regeneration thing that comes over the AP wire.   

Guessing not.  guessing that it's that people with food allergies inconvenience others, and the truth is that it'd be so much BETTER for the people sending us such upbeat info if we would just.... you know... quit doing that. 

Not that I'm bitter or anything.    Well.  Yeah, I guess I am.

[notashrimpwimp]

CM, that's exactly my reaction when these headlines come out and people feel entitled to ask whether I've considered curing myself or not.

Last time I tried the "eat what you're allergic to in small amounts to build tolerance" advice, I spent hours inside a bathroom and developed near ESP levels of shrimp detection.

I did ask about its legitimacy, mostly because my hinky meter went off.

[guess]

Links, not to treat you like my personal search engine but if you run across the UK peanut OIT that was supposed to be breakthrough let me know.  I'm trying to find the study.

[LinksEtc]

Links, not to treat you like my personal search engine but if you run across the UK peanut OIT that was supposed to be breakthrough let me know.  I'm trying to find the study.

I was just checking in before bed    ....

is this the one?

peanut allergy cure in uk dr clarke.

[guess]

You ninja, you.   

[CMdeux]

This seems to be the direct institutional press on the subject--

http://www.mcri.edu.au/news/2015/january/peanut-allergy/

and here's the abstract:

http://www.ncbi.nlm.nih.gov/pubmed/25592987


If anyone has institutional access, I'd love to actually see the study.  But as noted above, I have a pretty good idea on the basis of the few statements that made it into news stories from press releases.

NOT good experimental design, if I've come even close to correct about those features.

Further work is required to confirm sustained unresponsiveness after a longer period of secondary peanut elimination and to clarify the relative contributions of probiotics versus OIT.

Massive understatement. 

[SilverLining]

CM, that's exactly my reaction when these headlines come out and people feel entitled to ask whether I've considered curing myself or not.

I got a weird visual from this. A cute little fairy princess, pulling out her wand (with ribbons trailing and glitter falling all around) and beating the person over the head repeatedly with that wand.

[Linden]

I support those who are frustrated. I agree completely with what you are all saying. 

[CMdeux]

Somehow, this all seems exasperatingly related to my week's worth of frustrations on multiple fronts--

antivaccination claptrap, Woo as a cure for food allergy, a complete misunderstanding of what food allergy IS in the first place, and a gross sense of futility about what I do for a living. 

{sigh}


http://www.pewinternet.org/2015/01/29/public-and-scientists-views-on-science-and-society/