https://www.washingtonpost.com/news/to-your-health/wp/2017/01/05/new-nih-guidelines-on-infants-and-peanuts-may-contradict-everything-youve-heard-before (https://www.washingtonpost.com/news/to-your-health/wp/2017/01/05/new-nih-guidelines-on-infants-and-peanuts-may-contradict-everything-youve-heard-before)
New NIH guidelines on infants and peanuts may contradict everything you've heard before
On Thursday, the National Institute of Allergy and Infectious Diseases released formal, detailed guidelines for pediatricians and allergists.
The document, published in six medical journals, includes three separate sets of recommendations based on the level of risk an infant has for developing a peanut allergy. Those at highest risk are defined as babies with severe eczema — a skin condition where patches of skin become inflamed, itchy, red and cracked — or egg allergy or both. Those in the middle group have mild-to-moderate eczema. And those in the lowest-risk group have no eczema or food allergies.
I think it is just me today, but I am really sort of done with these sorts of studies. Why is it that nobody is starting with the premise that the child is actually born with the allergy? That no amount of perfect timing or looking for factors a child has is what is going to give them their allergy?
According to that study, my DS2 should have the peanut allergy. He had eczema so bad he had skin infections. The allergist that we saw at a big medical place was more worried about his skin than his egg allergy. And, we found out about his egg allergy at 5 months old after he accidentally got egg residue on his hand. I shudder to think of what would have happened had we actually set out to feed him eggs at that time like the suggestion is in the article.
And, for DS1, again, his allergy was discovered at 11 months, within the range of the article, and through residue. His reaction would have likely been fatal had we set out to feed him like is suggested.
I would also add that the better predictors of our kids' allergies has been to look at the history of DH and I, allergies, eczema, hay fever, food issues..... along with the foods I craved & ate heavily as protein sources when I was pregnant.
Everyone is so darn set on trying to figure out when to feed a kid what so that they don't get an allergy .... really? 641 kids is going to determine that?
Why not have a study about just how early some of us actually find out about the allergies? How many of us and our kids don't follow this model that they seem to be really trying hard to make the standard for food introduction?
So many of these studies coming out and if I was so scared of my kids developing food allergies that I followed them all of my kids would likely have ended up with major anaphylaxis or with a fatality.
Am I just the only one that thinks that kids are born with their allergies? I know we aren't the only ones that have weirdly discovered their kids' allergies so young. I still wonder how they find people for their studies too.
The best advice I can offer right now, even to those not looking for advice, is don't respond in a "hot" moment. This roll out on an organizational level is accompanied by organizational behavior that is entrenched, ready (and excited) to defend against essentially what they deem silly parents who get medical advice on Facebook. Doesn't matter what sort of professional alphabet soup we allergy mommies might have after our names or how cool under pressure we are in dire circumstances in the real world.
These studies will always exclude the most vulnerable population of juvenile patients. These studies will ignore that the first wave of patients were never subjected to the idea of abstaining from potent allergens. We had pets, fed table foods at 6 months, didn't believe in peanut allergy, traveled internationally, played in the dirt. I breastfed for 3 years. Unfortunately, both grandpas from the old country farms who also didn't know jack schitt about allergens have a well-established history of severe allergies, asthma, and anaphylaxis.
We need to grit our teeth and ride this out. We need to stay on top of epinephrine autoinjector diversity, affordability, and access here in USA and elsewhere as it presents. We need to hold education agencies accountable for FAPE. We need to keep going with what is, sadly, unchanged for the majority of us.
Many of us come from a time where our children's first reactions were not under the auspices of delayed introduction. This is an unthinking reminder of how much it continues to suck having no answers or reliable treatments that promote sustained unresponsiveness. Yes, moms will shoulder blame in the court of public opinion once again. Nothing new there. Simultaneously we will have to counter the alt-med pseudoscience woo continuing the war on two fronts.
For the population of infants that are "high-risk" excluding ironically the most at risk, this could be a blessing. If we are lucky it also will begin to positively reduce the amount of suspected allergies, clarifying to those who have a history of clinical response not merely false positive testing through panels.
Adding one last note, perhaps FAS' own Breaking Bad, PhD will expound upon or not: researchers can become sloppy in their science when presenting results they are excited about. Word of estimative probability morph from the scientific gold standard describing the direction and strength of relationships in correlation, i.e. "strongly suggests," to "shows" and "proves" which studies, particularly correlation even with low alpha and structural equation modeling or other causal inference, cannot do.
This doesn't mean we reject conclusions outright because it doesn't fit so-called anecdata, but does suggest perhaps need for qualitative analysis that would address the discrepancies between what the quants suggest and the lived experience outside of the data set examined.
I guess this makes me Walter White, doesn't it?
:D
In all seriousness, I found myself nodding to both your posts. Yeah, yeah, yeah... I DIDN'T buy into a lot of thinking about "delaying" introduction-- until after DD had anaphylaxed at 11mo old.
AFTER the weeping eczema... extended and really-- knowing what I know now-- EXTREME "colic" (which lasted.. hmmm... months and months and months... so much for "that's just babies.")
you know the drill. So sure. DD probably DID have early exposure. Didn't seem to help her to do anything but actually sensitize to a horrifying number of anaphylaxis triggers, quite frankly. But she has bad, bad genetics.
She's probably not the kind of children who will be helped by this advice. But are those kids a real population? Sure. They're probably just the tiny minority that they've always been. For the larger population of kids with food allergies, it seems highly probable to me that SOMETHING that we are/aren't doing is contributing to them sensitizing-- and then failing to outgrow when they used to.
Kids like mine are outliers. Not part of that population, probably, to begin with. {shrug}
I don't begrudge new advice aimed at the main part of the population. I do still begrudge the fact that outliers are called unicorns, however. We do exist, thank you very much. And we're NOT crazy. Just unlucky in the genetic lottery.
I thought this was about introducing before 6 months to prevent allergy?
6 months is a very recent idea isnt it? 1930's solids advised at 3 months, so perhaps this was a good idea depending on the food?
Also worth noting that this advice to USA has been given before England / UK, who are still working on the guidelines. This is based on a UK study, and I am wondering why? Are we too slow at change, or still refining advice? Or has USA decided to move quickly to give advice to feed early. After all, and being cynical here, the biggest market for peanuts is in USA.
At 6 months old or earlier.... how do you expose the child, who doesn't classify according to the study, to be at high risk? You put some peanut butter on a finger and shove it in their mouths to give them a taste?
That could have very easily killed my DS1.
But, wait, you don't feed it early if they have an egg allergy..... and who is testing with good verifiable results on 6 months or younger?
Have they suddenly decided that all the allergy tests are fantastically accurate on 4 month olds?
Has anyone been told by a doctor that allergy testing on infants is actually accurate? Especially at 2 or 3 months old?
Tests without previous exposure - sketchy results. Tests on eczema inflamed skin - sketchy results. Introducing food that early - sketchy. (Eragon when I was born in the early 70's, my mom was sent home with me at 6 days old and told to start me on cereal ASAP because I was starving. I was on fruits by 1mo).
DS1 tested positive via SPT for wheat, egg, peanuts and tree nuts at 6mo. He was not allergic to peanuts and tree nuts but I had to find an allergist who had a clue about food allergies and not environmental allergist parading as a food allergy expert.
So on the flip side - what about kids like my son who tests positive to everything under the sun (wheat, rye, barley, oats, rice, corn, eggs, dairy, soy, peanuts and tree nuts) but who is only allergic to wheat, rye, barley and egg. I struggled with a FTT child - can you see what would happen if child was supposedly allergic to everything?
https://www.youtube.com/watch?v=S_Pt06pSLY8 (https://www.youtube.com/watch?v=S_Pt06pSLY8)
link to youtube with Prof Lack explaining the study.
Quote from: eragon on January 05, 2017, 02:19:54 PM
I thought this was about introducing before 6 months to prevent allergy?
That is
part of the guideline, highly qualified by other variables and exclusive of others. I'm unsure what your question refers to.
The purpose is mainly aimed at
clinicians reversing their
own position. For the defined population it should start the ball moving in the right direction eliminating the few years clinicians (but not necessarily the patient population) believed in delaying introduction of potent allergens based on (1) unsubstantiated belief; (2) co-morbid indicators in allergic disease that were thought by clinicians to indicate predictive value in clinical response.
I think the point CM was making earlier was that the fear of developing a peanut allergy may have caused the shift in the non-allergic population to delay but they were never going to develop clinical response. Then there's the segment that could HIGHLY benefit from a structured, early introduction, and that is really what this seismic institutional shift is.
Now, the :poop: stirring clickbait media this will produce will probably be quite detrimental towards families already hit hardest. We here tend to be a crop of outliers that don't fit nicely into data sets, which arguably drives us to figure out living in between appointments and seismic institutional shifts. This doesn't really affect us one way or another because there's a good chance we're part of the exclusions that were never studied, or in a category that would not merit early introduction as described.
The boo hiss anecdata here will tell you no one followed any guideline to begin with. It would probably trend with the non-allergic population until wham-o anaphylaxis. We tend to predate
any introduction guideline or even heard of one. I know I didn't bother with the nut allergic child. We just introduced table foods because we had never really believed in food allergies. Then with second child we didn't tackle any top 8 prior to 6 months then WHAM; anaphylaxis to a non-top 8 at 7 months. We challenged milk in office because he was tolerating extensively hydrolyzed milk formula, we had hope. No dice, round #2 of anaphylaxis in infancy to a second allergen.
Not to sound cavalier but since my allergist is also a food allergy parent he lives first hand, so this doesn't move much on the chessboard for us.
Here is the rub for me watching the video. They've got 640 kids in the study. Around 10 minutes in the guy starts to talk about 98 kids who are skin tested that have small bumps.... sensitized as he calls them. Then he says there are also 76 kids who are excluded because they develop large welts from the skin test. They don't fit the study because they HAVE the allergy... and the study is only about prevention.
I would argue that the whole problem from the get go is that there are all of these people out there so afraid that their kids might get an allergy they do something that is dangerous because kids are clearly born with the allergy, and early introduction in the hopes of preventing it to me seems like a red herring to try and make it seem like there is actually something that doctors are doing about figuring allergies out.
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.
But, for the next few days, there is going to be a flurry of articles and headlines, clickbait all over the internet, about feeding kids peanuts early so they don't get allergies. There will be people "out there" that figure that "see, not feeding my kid stuff" is the problem. And, people will believe that if you only just fed your kid x,y, and z, they wouldn't have their allergies. You are too overprotective.
Without, of course, anyone knowing that they've excluded the group of kids that they aren't trying to figure anything out about. Those 76. Who already are producing large enough skin reactions to be believed to have an allergy severe enough at 4months old to be excluded.
Those 76 unicorns. My 3. All the other unicorns that apparently are really not that uncommon because there are plenty of us that seem to not fit any of the outlines of "typical" that are getting crammed in the articles along with "feed your kids peanuts early".
Not to mention the fact that by eliminating 76 of the group, you skew your numbers to make it so that the percentages reflect what? That a group of kids, that have already had the allergic ones removed, can eat peanuts early on, because what? Somehow they were going to develop an allergy to begin with at some point when someone could feed them food?
What if you eliminated the only kids that really would have the allergy by eliminating those 76? That your group that was left never really would develop allergies in the same way anyway because they are the percentage of the population that won't?
I guess I need to finish watching the video.... but I find it already annoying, and I don't think the guy is that great a speaker.
what are you looking for a total cure? This is a study that will prevent the few who qualify from developing peanut and egg allergies. same for any other current 'cure' out there.
There is a difference in being 'sensitised' and those that have the allergy. seems entirely sensible to me.
the other children fit the bill with regard to having the potential to develop those allergies. That was the whole point of the study, to halt that development.
This isnt for our kids, or all kids or every single allergic kid, it is to halt it developing.
But, what you havent picked up on, is that England, where this study came from has not published any guidelines on this as yet. But USA has, and that is a puzzling thing to me.
Sorry, keep having to deal with kids.
I actually came back because I wanted to mention the list of groups he has in a slide that it is implied they've changed their guidelines based on this study. AAAAI is there. Also American Academy of Pediatrics.
This is a study that had 4 groups. A total of 834 children. 101 were eliminated because they didn't have egg allergy or atopic issues. 76 were eliminated because of their already having an allergy. You have 194 kids, 2 of 4 of the groups for study, eliminated right away.
In addition, he has a slide he puts up to thank for funding, which includes the FARE logo.
I think for me, my main thing is with this study, and everything else out there similar to it, is that I want something better if they are going to be affecting the guidelines that may impact any medical care or coverage my kids get or anyone elses gets.
I think a body like AAAI should not be changing their guidelines for thousands of children based on a study like this where 50% of the groups are eliminated because they don't fit.
I will also just add that why shouldn't the whole point of figuring out food allergies be a total cure? Why not? A partial maybe preventative "cure" for kids who likely wouldn't have developed it in the first place? I think it is easy to say that they did a great job of preventing allergies when they eliminate almost 200 kids from the study.
And, studies "out there" should be about all of our kids.... because my allergic kids matter just as much as the other kids who they are guinea pigging with this stuff who don't have allergies and likely won't get them. If they are going to figure something out for the food allergic why not the ones that are already living it?
Anyway...... in general, this sort of study, that gets lots of attention, all it really does to me is make a lot of non food allergic people figure that there is a "cure" for all of us annoying peanut families. The reality is that nobody really that doesn't live with this cares about it unless it is an inconvenience, and this does nothing to help anyone already living with food allergies.
Quote from: gvmom on January 05, 2017, 02:46:32 PM
At 6 months old or earlier.... how do you expose the child, who doesn't classify according to the study, to be at high risk? You put some peanut butter on a finger and shove it in their mouths to give them a taste?
That could have very easily killed my DS1.
But, wait, you don't feed it early if they have an egg allergy..... and who is testing with good verifiable results on 6 months or younger?
Have they suddenly decided that all the allergy tests are fantastically accurate on 4 month olds?
Has anyone been told by a doctor that allergy testing on infants is actually accurate? Especially at 2 or 3 months old?
This is not a recommendation at all, so no one take it that way. I am massively atopic (environmental allergies, MFA, eczema, severe asthma, the whole shebang), DH gets sniffly for a few weeks each spring. My allergist actually does not test or see infants (they start at 2) but told me that the research was going in the direction of early exposure, so that is what we did with DS. He would have and would still be considered to be in the middle group - mild eczema - pretty easy to treat with moisturizing and only on the backs of his lower legs for now.
He had peanuts and tree nuts at about 6-7 months, starting with tiny amounts of PB and other nut butters mixed into barley cereal. I don't know that there is another way to do it at that age, aside from using nut flour the same way, because giving PB straight or whole nuts is a choking issue.
I honestly don't know what I would have done if I didn't have my doc to talk things over with. (DS's doc was surprised that I went that early with it, but was more worried about choking, and said that the way that we did it was good for that) And honestly, I don't know that it will make any difference at all. He has atopic genes from both sides, but I'm one of those weirdos that developed multiple allergies to atypical foods in adulthood.
This is going to be it for me today.... but did want to say, that the PB on the finger was more thinking back to ages ago when a Grandma might put a bit of something on their finger to try and get a baby to taste something. Or maybe that was my Grandma only.
The thing is, my DS1 poked at a mini bagel that had just the most transparent bit of PB on it. He wanted nothing to do with it. I figured he'd at least try it since he loved the little bagels. But nothing. He just poked it once. I didn't think he got anything on him. I cleared it away, cleaned off his tray, and when I turned back around he was breaking out in hives and purple splotches.
If I had hidden PB in something, and he'd gotten a full bite, I just don't even want to think what would have happened. I didn't have epipens or benedryl. Nothing but probably hope and maybe an ambulance would have helped.
But, shouldn't any of the peanut given for early exposure also not be hidden? If you mix it into something, how do you know it isn't the barley or wheat or whatever that causes the reaction?
Just in general, introducing solids early on is risky anyway.... especially to 4 months old.... and if you watch the video he talks about 3 months, and possibly how to do it earlier..... to try and reach those 76 kids who somehow got their allergies earlier than those allowed to stay in the study.
Main thing for me though is I don't think the study works.... especially enough to alter guidelines as implied.
Quote from: gvmom on January 05, 2017, 06:36:58 PM
But, shouldn't any of the peanut given for early exposure also not be hidden? If you mix it into something, how do you know it isn't the barley or wheat or whatever that causes the reaction?
Just in general, introducing solids early on is risky anyway.... especially to 4 months old.... and if you watch the video he talks about 3 months, and possibly how to do it earlier..... to try and reach those 76 kids who somehow got their allergies earlier than those allowed to stay in the study.
We had been doing plain barley cereal for a while before I added to it, so that I would be pretty sure that we could know that if we had an issue, it wasn't the cereal. We started 'flavoring' the cereal with other things (cinnamon, mashed banana, etc.) before we got to PB and other nuts as well, but DS has always been a little bit unusual in that he seems to prefer highly flavored foods more than the average American baby - tonight was chicken tikka masala that my Mom said was too spicy.
http://www.anaphylaxis.org.uk/2017/01/06/new-guidelines-published-us-introduce-peanut-containing-foods-infants-view-preventing-development-peanut-allergy/ (http://www.anaphylaxis.org.uk/2017/01/06/new-guidelines-published-us-introduce-peanut-containing-foods-infants-view-preventing-development-peanut-allergy/)
Anaphylaxis Campaign have published their response to the new US guidelines.
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.
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.
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.
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.
Totally agree MR B!
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.
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.
Quote from: eragon on January 06, 2017, 04:05:14 PM
Totally agree MR B!
You might want to withhold co-signing. Just sayin'.
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.
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 (https://www.food.gov.uk/science/research/allergy-research/t07043)-- 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.
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.
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.
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.
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.
http://linkis.com/wordpress.com/e8PVl (http://linkis.com/wordpress.com/e8PVl)
feeding your baby peanuts by Carina Venter.
guidelines for UK.
http://www.nhs.uk/news/2017/01January/Pages/Some-babies-should-be-given-peanuts-early-say-new-US-guidelines.aspx (http://www.nhs.uk/news/2017/01January/Pages/Some-babies-should-be-given-peanuts-early-say-new-US-guidelines.aspx)
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.
Totally agree with the weekend and wine. <once I get over this bloody throat infection>
Changing policy after 5 years doesnt seem like that long a time, agree.
But its nothing new...the tolerance treatments are the same.
We dont have much an idea about the length of tolerance. Tolerance has been greeted as a cure by some. Cautious optimism is the best way forward.
Every study is touted as a cure on social media , news, and yes many poorly informed people will skip up to us as parents and ask us in joyful tones, ' when we are going to get the peanut cure'?.
Which is SO annoying on so many fronts, like any other allergen isnt scary enough? oh, and the INSULT that is implied that we havent bothered to get our kid 'cured'.
We can choose to be annoyed for only so long. < why do you think we need wine? have given up chocolate because of the dairy>
< btw in terms of cures, the UK doesnt even have allergy shots as wasnt deemed safe due to deaths>
I am sure that new studies on the areas we mentioned are being poured over by the allergy boffins of the world. why would you think they are not, just because they arent broadcasting it? getting grants for studies is not an over night process is it? <oh, that word....that word so over used in England recently, the B one, yes Brexit, we wait and see how that impacts us with regard to studies>
Most allergic children, who grow into allergic adults, stay with the same allergy and from what I gather it doesnt change. They cope with flares of asthma, environmental allergies, if they have them, and avoid the food allergens. <What comfort that would be for us>
No doctor would base any guideline on one child, and this study wasnt one child.
Every single person with their infant, gives them food at home. I think I would prefer the guidelines are there for those that are considered at risk and get support. Many will ignore, those that are not well advised will take risks. But some will be helped.