I don't have answers but I would like to make an observation.

What I do to practice avoidance I can describe in five words: OPSEC and defense-in-depth.  Without me explaining it if any number of the allergy moms read a description I bet the procedures sound awfully familiar.  I'd bet real money on it.

In the back of my mind I constantly turn over the idea, "What does strategy look like?" 

It looks like two things to me at this point. (1) Equal access (2) Raising the bar for researchers, and I don't mean the ones that are truly contributing, furthering the knowledge base in a helpful manner. 

Anyhow, good night dear ladies.  The homework demons beckon.

QuoteThe public wants, no, needs, to see helicopter moms as the growth stunting cause of silly food allergic children who should be weeded out by Darwinism anyhow.  They need our kids to be three year old adults who can self-inject and shutter themselves in a corner keeping the disability hidden in order to not disrupt the darling 55-75 percentile who are bright, fully able, but not by standard deviations beyond the median.

In the first wave food allergies and anaphylaxis were an emerging problem dogged by ignorance that could be forgiven due to how novel allergic disease is.  While not exactly kind towards fellow man it's understandable that society would hope it was temporary therefore a matter of short term inconvenience that would go away.

That game has changed from problematic to epidemic.  I don't know about the rest of you but I don't need more correlative half-arsed psych evals by underqualified* individuals who don't bother to check themselves for bias or other flaws.  I'm also out of passes to give lazy researchers who can't bother to understand this under the lens of disability without mitigating measures, without any medical device or substance for prevention.

Word.

On the whole I'd need more time to think where is it now and where will it go, there's so many moving parts.  It's not like I find myself disagreeing with anything.  In some ways (for me) it's similar to Murder on the Orient Express.  Everyone had a hand in it.  But if I had to pull out one singular thought to backtrace from it would be a survival trait must not be pathologized absent of any other viable solution.  It's an abstract survival trait few understand and it is experiential, probably unlike most other life threatening disease out there because the trigger is a daily activity necessary for survival--eating.

Anecdotally, at brick and mortar schools while I have seen a few parents get "accommodations" for kids that test positive to alt med or conventional med by testing alone, they don't have those experiential behavior modifying effects from episodes to life threat therefore they tend to lack the behavior of constant threat assessment as a survival trait.

Agreed.

I'm cynical about attribution here, though-- I think that this is so not because parents/caregivers don't BEGIN that way, and maybe even TELL others to behave that way....



but because darnit, it's just so damned much ENERGY to maintain it over the long haul.   Which, from a functional standpoint, probably means that these are folks that start out with major orthorexia in their quiver, add ""food allergy"" (as opposed to food anaphylaxis-- the kind that this community lives with, I mean) when their children are 0-3yo, attempt to control every little thing around them and their kids, much to the incredible annoyance of those who can see that they are being a bit... er... uneven in application, shall we say (Oh, my kid is allergic to GMO wheat...  except in these locally produced tortillas, I mean)... and eventually, once the kids reach 5-8yo, the entire thing sort of fades because it's just too difficult to keep it going.

Maybe that is uncharitable of me.  I don't know.  It's just my impression as much as anything else, really.

Well I won't be able to tell on a granular level where we're disagreeing or agreeing but for the most part we're in a very similar demographic so I would go with implicit agreement with temporal limitations.

The expiration date on the pass has come and gone.  Once upon a time when FAB wrote the entry it was an accurate observation for both parents and medicine.  Much has changed for her, much has changed in allergy as a discipline, but unfortunately not much has come from research in terms of advancement or improvement.

Anecdotally, at brick and mortar schools while I have seen a few parents get "accommodations" for kids that test positive to alt med or conventional med by testing alone, they don't have those experiential behavior modifying effects from episodes to life threat therefore they tend to lack the behavior of constant threat assessment as a survival trait.

Empirically, research continues to hamper progress with the typical inclusion/exclusion criteria that includes in the same population subjects that test positive with no history generalized to an entire population that tends to conclude on children that are excluded due to history of severity.  We call that science based and anything that might have been valid about the children who were excluded, myth.

Then we have a medical system that will not really regulate who can practice allergy and what allergy means.  In that respect if medical professionals are muddying the waters how can parents at the receiving end be responsible for dysfunction?  How is the average person whose MD sends him or her for E95 or IgG testing supposed to understand the difference?

Yes, a few bad apples can ruin it, and maybe they did but now it's a known phenomenon.  I don't think it's something so incredibly pervasive that solid scientific practices couldn't address all the while helping the entire population.

{applause}

YESSSSSSS.   


As you know, I fall somewhere in between the two of you, TT.  I have abject disgust (borne out through many years of close proximity and collaboration) for those who call the squishy stuff "science" all the while ignoring their own biases or pretending that their experimental design is robust enough to mitigate those blind spots.  (Yeah-- mitigating measures.  Sure.  See what I did there?)

But I also can see that all it takes is a (very) few bad, bad apples in parenting anecdote to poison the well pretty significantly.  We absolutely DO NOT help ourselves when we compare food allergens to loaded firearms, people.  REALLY not when the child in question has no anaphylaxis history, and has been diagnosed via testing alone.

"At risk of" and "having a convincing history of" are very, very different things here. 

I'd like to think that no conscientious and loving parent would ever limit a child's developmental arc out of fear rather than necessity, but I do suspect that this is a thing some of the time.  Look, our anxiety thread talks about those things.  FAB's blog posts address it with her inimitable wit and intelligence-- and (I hope I'm not giving anything away here)-- the FAB used to be our site's Admin once upon a time. 

I also suspect that the world that FA people like my daughter live in generates either learned helplessness or unbelievable toughness.  I think it's probably binary.  It's a HARSH way to live; you don't control your own destiny day to day, and never will-- and the people who SHOULD care enough to bother sometimes place their own whims about food above your need to live and be safe.  Who could possibly not develop some baggage around that reality??

Tautological was my initial response.  Kids with substantial limitations of major life activities have limitations compared to peers who don't. 

I'm not the greatest champion of qualitative research because I think it gets a little too squishy when that pendulum swings too hard, but continuing investigation by asking "w" questions (what, why, where, who, when) about what necessitates strict avoidance espoused as current best practice would have shed light on what accommodations look like out of need, backed by quantitative evidence suggesting by five or six years of age the vast majority of kids have mastered some initial self-management. 

My husband and I are somewhat split on the effects of the current batch of correlative psych based research on kids and MOMS with food allergy.  Based on his position as a peer reviewer for human behavior and psych, he's rather disgusted at the level of bad science from study design, conclusions, biases.  He's male.

What I see as a female differs from his perspective because I don't have male privilege.

What I see is a continuation of what started with the Christiakis *op-ed* that it's all made up by anxious, hysterical women which led to the Joel Stein ill-fated, widely publicized character assassination of parents up until the awful moment Stein's own child ended up experiencing anaphylaxis from nuts his father fed him.

Oh, the new studies mimic good science.  They'll have the minimums for publication but in my opinion they are making it to the airwaves not on their own merit because the data analysis is so darned good, it's because of the subject matter itself.

The public wants, no, needs, to see helicopter moms as the growth stunting cause of silly food allergic children who should be weeded out by Darwinism anyhow.  They need our kids to be three year old adults who can self-inject and shutter themselves in a corner keeping the disability hidden in order to not disrupt the darling 55-75 percentile who are bright, fully able, but not by standard deviations beyond the median.

In the first wave food allergies and anaphylaxis were an emerging problem dogged by ignorance that could be forgiven due to how novel allergic disease is.  While not exactly kind towards fellow man it's understandable that society would hope it was temporary therefore a matter of short term inconvenience that would go away.

That game has changed from problematic to epidemic.  I don't know about the rest of you but I don't need more correlative half-arsed psych evals by underqualified* individuals who don't bother to check themselves for bias or other flaws.  I'm also out of passes to give lazy researchers who can't bother to understand this under the lens of disability without mitigating measures, without any medical device or substance for prevention.

Let me finish this thought with a real life example of unintended consequence.  Testing for helplessness or true developmental delay takes a lot more than one or two puzzles.  The circumstances of testing are also, by default, an artificial recreation of a natural environment for the purposes of measurement.  Our team of developmental specialists are combo MD PhDs in a research facility at a large teaching hospital inside of university.  They often use food.  They often test on things related to eating food as a tool for measuring behavior.  The rooms are full of food residue.  The therapists rely on food use for therapies and for testing.  Hold the candy, count the candy.  Reward with pudding. 

Erroneously attributing cause to strict avoidance, which is best practice, across the board will have a viral effect transferring ignorance to others in the field.  I've had intense sit downs to educate our developmental MD PhD who had a come to reality moment with the allergist about what anaphylaxis is, what allergies are not, and really how much of an unavoidable toll constant threat assessment takes in the ability to perform THEIR tests under dangerous circumstances without proper accommodations for the disability.

Milk allergic child taking a test with room covered in milk crackers, was to be offered pudding by a therapist, must handle manipulatives by other kids who were eating his most potent allergen, all the while too delayed neurologically and too young to comprehend the abstract danger.  Test questions include situations drinking milk and eating ice cream. 

The time on the clock has run out for doctors, researchers of any stripe to remain so ignorant of disability when information to the contrary is so easily available to all of them.  Everyone wants to be the king here with fractured dominion over how the course of the disease should be managed.

Mitigating measure
Cure
Treatment

Give me ANY of those that are FDA-approved safe, effective and prove to remain safe and effective in perpetuity backed by longitudinal data for all with the allergic disease.  Until then swallow that dose of reality that it is a disability needing accommodations in behavior and decision making, that there are no mitigating medications, and that what could have been hoped to be a transitory inconvenience caused by Munchausen mothers has become epidemic reaching the children of famous male skeptics like Stein who learned the hard way.

*underqualified in terms of education and training related to a specific disease making unqualified judgments related to the disease, and showing no inclination to collaborate with a professional who is qualified, or should add a qualified legal professional when indicated

Quote from: becca on November 09, 2014, 10:13:21 AM
Great minds, SL. 

Sorry to bring you down to my level.

Great minds, SL. 

Quote from: becca on November 09, 2014, 09:47:02 AM
"The researchers didn't see any differences in requests for help among the five- and six-year-olds with and without allergies.

There were also no differences between the groups of kids in the number of indirect requests for help with the more difficult puzzle or the number of direct requests for help for either puzzle, according to the results published in the Journal of Pediatric Psychology."

So, where is the problem??

That's what I said. ^^^

Quote from: SilverLining on November 08, 2014, 07:43:52 AM

Quote from: PurpleCat on November 08, 2014, 07:23:14 AM
Clearly they weren't watching my child!

Maybe they were watching yours at five.

QuoteThe researchers didn't see any differences in requests for help among the five- and six-year-olds with and without allergies.

If children at three and four there is a noticeable difference in them indirectly asking for help, maybe it's just that those parents are, overall, more engaged with their children.  Because, apparently, a year later they are just as independent.

So....what's the issue?

...in the experimental design and basic grasp of the meaning of "statistical significance" among the average psychology researcher involved in such studies? 




Oh.  That was a rhetorical question, wasn't it?   

"The researchers didn't see any differences in requests for help among the five- and six-year-olds with and without allergies.

There were also no differences between the groups of kids in the number of indirect requests for help with the more difficult puzzle or the number of direct requests for help for either puzzle, according to the results published in the Journal of Pediatric Psychology."

So, where is the problem??

Neither was DS.

No precious snowflakes here. 

Luck of the draw perhaps, but DD wasn't like that.

True TT.

Researcers: Tell me that learned helplessness was involved when I realized my son could read at age three that I showed him the word "peanut" had him start reading labels. He was learning helplessness alright when he learned how to use his Epi at age five and he begin training others. Also when I told him if he were ever kidnapped he could use his Epi in the neck or face of the person who was harming him in order to get away.

He was learning helplessness when he had to carry his own meds from class to class, when he had to say "no, thank you" when friends or adults offered him cookies or cupcakes and when he had to write thank you notes for food people gave him that we tossed in the trash can.

What a piece of work.