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Author Topic: New NIH Guidelines on Infants and Peanuts  (Read 7269 times)

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Offline eragon

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Offline CMdeux

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Re: New NIH Guidelines on Infants and Peanuts
« Reply #16 on: January 06, 2017, 10:58:53 AM »

Excluding the kids .... those 76..... the ones that clearly are allergic and won't ever prove that early introduction prevents allergies is part of the problem.  Yes, you obviously can not feed those kids the double blind anything ..... and you aren't going to be able to put any prevention or prevented label on them.



Yes.

And yes, what I was suggesting is that having atopic genes clearly isn't sufficient to predict food allergy in particular, and maybe-- maybe-- early introduction will move the needle BACK to where it used to be-- but-- and this is a BIG but--

why is it, then, that the predominant food allergen in any cultural setting seems to be whatever superpotent (seed storage or marine myoglobin) protein is MOST UBIQUITOUS in the local food chain?

This early introduction study does not, IMO, address that central issue.  In fact, ignores it. 

So in the Middle East, that allergen is sesame.  In North America, it is peanut.  In some Nordic nations, it's a fish protein. 

You cannot for one minute argue that this is a matter of 'early avoidance.'  It isn't.    If anything, it's a matter of the allergen being EVERYWHERE...

DD was definitely exposed via breast milk to everything but seafood, including nuts, fish, etc. etc.  Just as clearly-- in retrospect-- she was reactive to some of her anaphylaxis triggers very very early.... maybe even 'from birth' though I can't actually say that for certain.



There was some thought a while back that this was a matter of ROUTE of exposure, not timing-- that is, that exposure through eczema-damaged skin to whatever-it-is food proteins produces sensitization.    Filiggrin defect stuff.    I'm still not convinced that this is entirely wrong-- and that maybe this is a real phenomenon in "high risk infants" as well. 

And yes, I realize that Dr. Lack is approaching this from the angle of preventing such sensitization via oral introduction occurring BEFORE skin exposure in such infants... 


I also am sick and tired of the national medical advisory boards trotting out new ways to "blame" parents for their children's problems, conveniently FORGETTING that it was their stupid, and poorly researched "advice" to AVOID early exposure that maybe contributed to the wave of "allergic" kids in the early 2000's who were sensitized, but not clinically reactive.... or at least not MUCH clinically reactive-- and what the heck was all of this "avoid during pregnancy and lactation" business, anyway??  Where did THAT come from?  Why were women told that for a decade??

It had less basis than this, I will say that. 

Of course, I think what gvmom is pointing out here is that this isn't a TON better because it's so preliminary-- and the N is so small, relatively speaking, for the high number of participants who were DQ'ed out. 

So yes.  What about those 76-- what of them?   Because those 76?  They are US.
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Mr. Barlow

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Re: New NIH Guidelines on Infants and Peanuts
« Reply #17 on: January 06, 2017, 11:34:48 AM »
My concern remains about shortcutting the process by presenting findings as truth instead of adhering to gold standard language one tends to find in APA publishing standards.  Small N gets tweeted and validated on blogs - which is neither peer review nor appropriate literature review - and suddenly we get a bunch of head nodding that evidence "shows" or "proves" when really data suggests potential.  Then, somehow, the traditional process of literature review which absolutely invites critiquing methodology, conclusions, exclusions is subverted because of the momentum of social media in a MUST FEEL STRONGLY NOW about a hypothesis that has some supporting data, but like any other hypothesis with moderate correlation, needs to withstand challenge and garner increasing validity.

Quite frankly, I have a collection of studies myself that show a small group can control truth through well-intentioned justification and be completely unaware they're doing it while moralizing against the group they purport to help and receive gratification from.  Trotting them out would only provoke defenses of, "That's other people not me!" 

Social media rubber stamping any study into truth and shaming the process for literature review worries me.  This is the precise problem I have with the OIT FB group raging out of control. 

No hard feelings.

Offline gvmom

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Re: New NIH Guidelines on Infants and Peanuts
« Reply #18 on: January 06, 2017, 01:52:26 PM »
I really shouldn't be here today.... I am swamped..... but just wanted to share a study from gvmom's DH....

... it is egg allergic severely atopic children who don't develop peanut allergy when they strictly avoid exposure.....

It is highly successful.  Our son who is 14 now has followed this advice and didn't develop a peanut allergy.

I wonder if we could get funding? 

It was very easy to keep DS2 from being exposed to nuts since our house was nut free thanks to DS1.

See how easy that was to make it so strict avoidance is the way to keep your egg allergic atopic kid from developing a peanut allergy?  But, our experience is dismissed as recommended because? 

Also, just wanted to add that I wonder where the control group was in the study that was also the children who had the same set of requirements for admittance to the study but were under the advice to strictly avoid?  There should have been just as many children in the study who were required to not eat peanuts to see if they developed or didn't a peanut allergy as those with exposure. 

And, just also a "yes" to Barlow about shortcutting the process.

Where is the replication of the study too?  If they are so sure of the results, they should be able to replicate it.  Clinically.  Not as a guinea pigging of the entire allergic community because one study says so.

I will also add a "yes" to the idea from CMdeux that there seems to be a lot being ignored when it comes to possible avenues for research that just seem logical when it comes to food allergies..... especially when it comes to prevalence of protein types in different geographics. 

And, I would add, that our kids get exposure in utero.  DS1 wondered about possible reactions he might have had "in Mommy's tummy" to his allergist back when he was 5.  Again, things we have wondered about for years now, that somehow just are completely irrelevant to anyone trying to keep kids from developing allergies. 

Ignored possibilities all over the place.

"...who knew that Black History Month was really about an Orange White guy" ~gvmom
"...but HILLARY!" is not ACTUALLY a legal defense in the real world.  ~gvmom
"Don't feed the trolls; nothing fuels them so much." ~Oscar Wilde
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Mr. Barlow

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Re: New NIH Guidelines on Infants and Peanuts
« Reply #19 on: January 06, 2017, 03:19:50 PM »
The study producing guidelines has rigor.  That has merit, and the findings are significant for the defined population.  Evolved guidelines from pulling something out of their rear (strict avoidance just cuz) to informed guidance (control and experimental) across risk groups is a tremendous step in the right direction... perhaps.  Time and more data will tell. 

Generally speaking, gvmom, medical study inference sans clear cause tends to look 'primitive' compared to other disciplines so even if we all here built the perfect study (whatever that may be) the models don't improve across the board in journal publications.

For context CM and I live in the same academic community and both households and social circles have multiple published researchers.  Meaning we're inclined to use our institutional access to come together probing the paper itself rather than proxied interpretations.  The study itself is not problematic, however the hype and presentation of results outside the publication, particularly the social media treatment, is what I'd like to see dialed back.  Promising results!  Good beginning for limited use. 

My personal opinion is that no one should really get their feels too much about it.  Too early.
« Last Edit: January 06, 2017, 03:22:58 PM by Mr. Barlow »

Offline eragon

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Re: New NIH Guidelines on Infants and Peanuts
« Reply #20 on: January 06, 2017, 04:05:14 PM »
Totally agree MR B!
Its OK to have dreams:one day my kids will be legal adults & have the skills to pick up a bath towel.

Offline gvmom

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Re: New NIH Guidelines on Infants and Peanuts
« Reply #21 on: January 06, 2017, 04:21:11 PM »
I'm all for research and publishing and academic theories, etc.  Great.  Would have loved to stay in university for the rest of my life doing research, surrounded by books, and coming up with all sorts of stuff.

I also am okay with arguing about the merits of a study.  Cause, why not debate that?  There is a lot of stuff "out there" that people debate the merits of.  Religion, politics, social policy, etc.  This happens to be of interested because food allergies is what we live and are interested in, and have a particular bent in our family about what we'd actually like to see researched.  And, given our backgrounds, have ideas about that from a process standpoint as well. 

I'm not really just getting all worked up and wringing my hands over here..... I'm still vacuuming and ignoring the dusting and bathroom cleaning that I'm supposed to be doing.... as usual.

But, the whole issue about the publication being splashed all over is a huge problem.  And, the fact that this study, that I'm okay with being discussed at conferences or other sort of academic speaking type of venues, is now taken to influence some very major players in the mainstream world, that affects non academic people, just trying to live their lives and do what they need to for themselves & their kids, is a problem.

The whole direction so many things have taken in the world today, instant gratification, twitter news, and so on, annoys me.  It doesn't cause me to stop living my life.  You can't unring a bell though. 

It is one thing to talk about it amongst a circle of researchers, who have a different mindset in a way, as they discuss things and think about a study.... it is a whole other thing to take that entire kit and kaboodle and put it on yahoo or huffpo and splash a headline telling people to feed their babies peanuts now. 

And why not question it?  Every last thing about it?  If it has merit, if it is just that groundbreaking, then it can handle the scrutiny. 
"...who knew that Black History Month was really about an Orange White guy" ~gvmom
"...but HILLARY!" is not ACTUALLY a legal defense in the real world.  ~gvmom
"Don't feed the trolls; nothing fuels them so much." ~Oscar Wilde
Trump=Idiot https://twitter.com/spikedcranium/status/966768001943875584

Mr. Barlow

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Re: New NIH Guidelines on Infants and Peanuts
« Reply #22 on: January 06, 2017, 04:53:40 PM »
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.


Mr. Barlow

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Re: New NIH Guidelines on Infants and Peanuts
« Reply #23 on: January 06, 2017, 04:56:27 PM »
Totally agree MR B!

You might want to withhold co-signing.  Just sayin'.

Offline gvmom

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Re: New NIH Guidelines on Infants and Peanuts
« Reply #24 on: January 06, 2017, 07:05:35 PM »
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. 
« Last Edit: January 06, 2017, 07:07:15 PM by gvmom »
"...who knew that Black History Month was really about an Orange White guy" ~gvmom
"...but HILLARY!" is not ACTUALLY a legal defense in the real world.  ~gvmom
"Don't feed the trolls; nothing fuels them so much." ~Oscar Wilde
Trump=Idiot https://twitter.com/spikedcranium/status/966768001943875584

Offline CMdeux

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Re: New NIH Guidelines on Infants and Peanuts
« Reply #25 on: January 06, 2017, 09:20:41 PM »
I also won't go so far as to suggest that I'm "uniquely" much less "exquisitely" qualified to debate the merits of this or anything else.

Not now, anyway.  Been out of this particular game a long time, let's just say.

However-- defining the population is still THE name of any statistically meaningful study. 

I'm just scratching my head over why they excluded the kids that seemed to belong to the high risk group if they had ALREADY sensitized... I mean-- why not at least count them as "failures" in terms of prevention.... hmmm. 


Because they are.  I mean-- four months wasn't, what.... SOON enough?  I don't know and neither do the authors.  But they DID fail to be impacted by the study in the way that the authors had hoped.  I mean, I get that they wanted  a "clean" sample of yes/no relative to their own paradigm, here, and dependent variables, not confounding ones-- but--

still.  THOSE kids were high risk, too. 

And I think that it's worth noting whether or not a population which is high risk can sometimes be helped to avoid-- or always so-- by early introduction.  KWIM?

Because earlier studies-- also funded by NHS, also at Imperial College London-- have shown that the more a family eats the priority allergen in question, the MORE LIKELY it is that a high-risk child will become allergic to it. 

So gvmom isn't wrong there.  That is what previous studies have actually shown. 

Resistance isn't futile.  It's voltage divided by current. 

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Mr. Barlow

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Re: New NIH Guidelines on Infants and Peanuts
« Reply #26 on: January 06, 2017, 11:17:40 PM »
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.

Offline lakeswimr

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Re: New NIH Guidelines on Infants and Peanuts
« Reply #27 on: January 07, 2017, 03:42:33 PM »
CM, I wondered the same thing when i read the link.  Did they exclude only based on the positive skin test?  What about the false positive rate of testing? 

Similarly, as you said, we know that top allergens vary by country and see tied to how frequently the food is eaten in a given country and also how the food is processed in that country (dry roasting vs boiling peanuts and America vs China, etc.)  How does that fit with these recommendations?

I think the eczema link is interesting. 

I hope one day we will know the cause of the rise in FAs and FAs in general.  DS showed his first reaction day 1. 

Hopefully these new recommendations actually help prevent others from ending up with FAs.  That would be a wonderful thing. 


Offline lakeswimr

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Re: New NIH Guidelines on Infants and Peanuts
« Reply #28 on: January 07, 2017, 03:55:46 PM »
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. 

Offline eragon

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Re: New NIH Guidelines on Infants and Peanuts
« Reply #29 on: January 08, 2017, 08:11:39 AM »
Although I love hearing about studies, ( I attended the medical conferences on allergy with great interest), I realise that the gap in knowledge is huge.
The crazy, (but seemed logical at the time) advice  to avoid peanuts if in high risk family was followed by everyone. Many woman decided that during pregnancy they should avoid just in case. Then we had a huge wave of peanut allergic children born from non atopic families. 

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 dont know that anyone really knows the cause of allergies, yes they understand the mechanics of it all as it happens in the body, they know  certain proteins kick it off. But the bullet, the cause is not clear. 

Studies that are more useful like the LEAP, provide fuel for more questions, and perhaps a direction for further study.

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.

Our son is one of those odd ones that continually surprise the doctors, which is something when most immunologists feel that all parents have the view that their child is the most allergic in the world.   We were more or less told our sons random swelling was controllable, and mild and would burn out by his 20s.  Wrong. very wrong. In fact its here, and we have a son who doesnt need to eat, inhale an allergen, to have anaphylaxis when his body reacts to his own mixture of histamines in the body.

Nothing wrong with hope for a cure, but be realistic, not for our kids generation. perhaps our grandchildren or great grandchildren.
Its OK to have dreams:one day my kids will be legal adults & have the skills to pick up a bath towel.