But what's next?

A weekend with a bunch of wine.....

Seriously, my opinions don't really accomplish anything.  I get to post on a discussion board, air my gripes and that is pretty much it.  I'm old and tired.  My real battles and gray hair were with my older kids with elementary school.

I mean, part of a discussion board is the discussing it part right?  I don't have to go out into the world and be a revolutionary pushing 50 do I?  Although, who knows, maybe one of my kids will be inspired by their old Mom going on about some of this stuff.... you know, while I sit at the computer, posting ..... and then nagging them about homework.

But..... and eragon..... I think I've got who you are right from days long ago, and you are one of those people who is foundational for me.  I remember you , if I'm right.  And the earlier days.  What you say, and your experiences, have way more weight in my opinion than these guys with their new study.  You have history.  They don't.

And I would say, that when you post:

I dont know how long UK has been eating peanuts,  its not that long, but certainly the most common allergen in infants is still egg and milk, so where did the peanut allergy really come from?
new allergies to food that is recently now part of our diet is kiwi fruit, as that only came over in the 80s.
So, is it new food, is it common food from that country?
Is it both, one leading to another?
If so why?

I want to say.... yes.... exactly.  And why aren't they working on THOSE questions? 
 
Studies that are more useful like the LEAP, provide fuel for more questions, and perhaps a direction for further study.

And, why aren't they studying more.... rather than issuing new policies.... more questions should lead to more investigation.... not what is going on now. 

I really hope that this study halts the development of the disease for some.
I dont think it is anyway near a cure, much like induced tolerance.  Which is a vast ongoing experiment and only time will tell if the promised improved quality of life lasts long term.

It would be great if some didn't get the allergy based on what went on in the study, but the thing is it is being passed off more like a cure which is problematic for me.  And, instead of it being really talked about in context.... an experiment.... it is supposed to be some sort of discovery that seems so set in certainty. 

They've done this study, they've put out policies.  I still want to know what happened to those 76.  And, what about all of those success stories..... or the ones that were sensitized, that theoretically are cured, that maybe rebound to worse?  How long do they follow these kids and really get what is going on? 

Your son is still surprising doctors in his 20's?  Well..... what would you have said about a doctor that called a diagnosis on him at 5 a wrap?  Or, taken the information about your son's experience, only up until the age of 5, and then decided on guidelines for every other child based on them? 

I'm not saying that to be argumentative to you either...... more like an example since you have a child in their 20's that continues to not follow the models. 

Those of us with kids who are older ...... many of us..... know that the allergy journey is weird and unpredictable.  They aren't asking more questions, and are stopping before they even get started or add more questions they should have in their studies. 

Before the study is used to create policy, why can't they even see where they stand with these kids ..... checkpoints after their 5 years to see if what they think they've figured out really is what they think it is?  I know that we still had a lot of changes after 5 years of age....... we can't be the only ones. 

http://linkis.com/wordpress.com/e8PVl   

feeding your baby peanuts by Carina Venter.

The other thing that I thought when reading this was that people who have egg allergy have an allergy, too, and one that also stinks to have.  The focus on peanut sometimes gets to me.  But then they said they are doing other similar studies on some other foods including egg in the future but results will take some years. 

Issuing a personal opinion on a message board or submitting professional response to a refereed journal?  The former won't accomplish much.  The latter, assuming serious desire to enter the research game would require the skills to do so.  Those skills are usually obtained through learning from industry professionals and adhering to the standards of an accredited institution.  There's already too much bad science out there published by those who believe they had good science, if we believe the research researching researchers. 

Here's the breakdown of how this plays out.  Mostly male doctors engaging in borderwork interact with allergy mom bloggers or allergy nonprofit moms who take up a cottage industry role around food allergy.  Circle of validation ensues, funding from Mylan, blog summit, slowly independence leaks away because the watering hole is not sustainable unless the circuit is continued.  You really, really want to go down the rabbit hole I am game.  It's still going to need skills rising to meet specific challenges and standards of the field which will help attract willing, equally qualified collaborators.  Otherwise it's just bitching on a message board and you will be branded a hater by the circle of social media validation.

If I was with OIT101 I would be on the new guidelines like stink on poo because it sure seems to closely mirror the private practice OIT collective experience.

@CM.  It's something unique and exquisite to be such an outlier in so many ways.  PhD to MD parent-physician relationship who both deal with MFA, outlier reactions from infancy to adulthood.  There are not so many of those patient-allergist experiences like that out there.  The craptastic cherry on the cake is how much trailblazing you've had to muscle through undoubtedly leveraging that strength. 

@gvmom.  You're a fighter.  That's good.  But what's next?  Straight up I'd say go for University of Amsterdam's Data Science cluster.  Should be free or low cost and works at a reasonable pace in a peer environment.  I think the Johns Hopkins cluster is available thereafter.  You do that and you should be able to clapback hard.

Therefore, I don't tend to enter the sandbox with the true hard science academics.

Why not?  Especially if we are talking about food allergies?  I mean, I don't know who you are, meaning familiarity with your username.  I know who CMdeux is.... and they know who I am.  Probably for about ... what?  16 years now? 

Why wouldn't your knowledge about your allergy or your child's allergy warrant just as much respect? 

I mean, the one allergist we had years ago for DS2 had never had a child rebound with their allergy before.  We gave them new information they had never come across.  Not that it really means much, but sometimes you can just be a regular old person that has something significant that teaches something to the person with the degree after their name. 

I don't really think CMdeux's credentials are actually being called into question... unless they were writing that study... and even then it wouldn't be about questioning credentials, but I'd be comfortable questioning studies & findings. 

But, do you think that it might have been different if maybe the whole story that came out was something more like "New study offers possibilities"... or something vague-ish like that.  And, if AAAI had issued a statement that was more along the lines of being excited by the new information coming out the study, and they'll be looking into what the study findings mean for those in the allergy community. 

I actually like the response that eragon posted .... that one seemed more measured.  More appropriate. 

Why is it that it feels like there is this undertone of desperation to finally just be getting rid of food allergies.... like, finally, great, just feed the kids the peanuts already and we can be done with it and move on.  That there is this glombing on to something, anything, just to finally have a cure. 

Honestly, there are plenty of days where I am happy to just have the food allergies given the myriad of other things in the world that we might be faced with. 

This is really where the full time players start to pull away from the part timers.  Though she won't come out and say it CM "Heisenberg" deux is truly the sole denizen here exquisitely qualified to play with the big leagues.  There are other people here with impeccable pedigree in other disciplines also falling short of the methodologies for hard science at the doctoral level including experimentation.  There are people here very dedicated to developments in allergy with good hearts who enjoy blogging.

But, and here's the part that makes medical professionals clutch their pearls, she is what the industry requires of a qualified scientist.  I'm not; the rest of us are not.  Part of stepping up is knowing where you fall short, which is a problem for medical types who mistake her for minor league.  A rigorous hard science doctorate builds skills not otherwise attained.  It ideally prepares for reducing biases, promotes excellence in experimental design, and encourages to add to the body of knowledge.

Even if some of us are two standard deviations from her instead of three, the difference in the last standard deviation or two is cavernous.  So for starters anyone could rail against a study but it takes a scientist to review as a peer.  A science PhD is not remotely my goal.  Therefore, I don't tend to enter the sandbox with the true hard science academics. 

That said, crappy or sloppy science deserves to be excoriated.  You can pinpoint sloppy about where the talking heads leave the science of the pub itself into blogland, FB, or tweets. 

I fully support anyone wishing to meet the scientific standards.  That may entail a long hard road to attaining the appropriate skill set level.  CM likes me but if I was taking research methods class from her and I wrote alpha was zero instead of approaching zero she'd give me an F without hesitation.

Totally agree MR B!