On FB I liked a group "parents of kids with severe peanut allergies" and the group has gotten very active.
And it drives me crazy.
The questions asked are ones we've addressed here. And FB seems such an inefficient way to deal with this type if content, because there's no real way to keep track of content.
And I'm dying to point people here. But it would be bad form. So I think I just have to leave it. Because I am going crazy.
Maybe you could just message them privately- even if it goes to their "other" section of the mailbox, they will eventually see it...
It depends really, I don't think it would always be 'bad form'. People are looking for support. I know that here...it's discouraged to post links to other support groups (I actually disagree with that stance, but that's another conversation).
I'm going to suggest contacting the FB group owner and asking if you can posting a link to the support forums here.
???
Adrienne
I don't think it is "discouraged"
per se , so much as that it is gently discouraged if it appears to be link-farming or forum-spamming. Regular members who take the time to make thoughtful posts here, I can only think of a VERY tiny number of instances in which posting links was considered over-zealous. It was handled privately and as a
request to tone it down just a touch, that's all.
The problem is when someone who seldom posts, is new to the forum, or posts a LOT of posts in a flurry....
includes a link to the same.exact.resource. over-and-over-and-over... in pretty much every post they make.For example:
[spoiler]
Quote
Go to website Z (http://website%20z)
Quote
Website Z (http://website%20z) talks about where I take my kids for fun...
Quote
Have you gone to Website Z (http://website%20z)? They have great allergy-friendly recipes there...
Quote
I talked about this over at Website Z (http://website%20z) recently-- check it out.
[/spoiler]
Now imagine that those are each responses to different threads, all within a week or so, and that this comprises 70-100% of the person's posts...
That's promotional, and while it's hard to define, it's definitely clear when you see it. <sigh> An
occasional redirect is fine-- especially when the information is not really current or frequently discussed here. Things about EE, for example, I
expect that the 'best' answers are going to include links to KFA.
On the other hand, I would also anticipate that the flip side is that few people
there get much in the way of 'good' 504 advice given that this is a domain where linking to US would be helpful (and it's not permitted, really, as I understand it)...
so different policies are there for different reasons, and both are completely valid responses to the problem of forum/comment-spamming.
I wouldn't THINK that a single link that comes as part of a well-considered and thoughtful post would be considered comment-spam, but I suppose the polite thing to do would be to ask first.
That wasn't my experience. I felt I was being told that either I would edit my posts that recommended some members also check out another forum or that it would be done for me. It's difficult to tell tone on the internet but I didn't appreciate the tone of the message. It took me by surprise. YOu may have noticed I hardly ever post recommendations that someone check out another site anymore. I don't think I have done it even once since I got the private message. HOWEVER, in return I no longer recommend this site to anyone elsewhere, either. I used to do so. I did so many times. I agree that your example is something that should be addressed *politely*. However, I didn't agree with or appreciate the way I was 'asked' to edit references to another board from my posts.
My concern, though, is for access to accurate info for people who deal with FAs and the safety of people who have FAs. That was my motivation in posting recommendations that people also check out that other site. I thought and still think in some cases people would be better served there and vice versa.
I don't see a thing wrong with at the very least asking to post links to here. They might get more traffic there in response. It could be win win.
Quote from: CMdeux on June 15, 2013, 02:17:58 PM
I don't think it is "discouraged" per se , so much as that it is gently discouraged if it appears to be link-farming or forum-spamming. Regular members who take the time to make thoughtful posts here, I can only think of a VERY tiny number of instances in which posting links was considered over-zealous. It was handled privately and as a request to tone it down just a touch, that's all.
The problem is when someone who seldom posts, is new to the forum, or posts a LOT of posts in a flurry.... includes a link to the same.exact.resource. over-and-over-and-over... in pretty much every post they make.
Our site and various links to FAS have been posted at that page various times over past 2 years,
Quote from: nameless on June 15, 2013, 01:01:33 PM
I'm going to suggest contacting the FB group owner and asking if you can posting a link to the support forums here.
Quote from: lakeswimr on June 15, 2013, 10:02:05 PM
My concern, though, is for access to accurate info for people who deal with FAs and the safety of people who have FAs.
Good ideas/points.
------------------------------------------------------
Each group has its own rules and feel to it and it's good that you're sensitive to that. You know me, I :heart: links to everywhere - good articles, good blogs, support groups, advocacy orgs, etc ... I think FA families benefit from shared knowledge and efforts. Yes, of course, spam isn't a good thing, but where that line is - I'd probably allow more than most groups would.
The person who has that Facebook page is named Louise Larsen. (This is open/public information.)
Google and/or read about her at LinkedIn.
She is writing book.
Her blog.
http://louiselarsen.blogspot.com/ (http://louiselarsen.blogspot.com/)
Mc - I belong to that group, too. I agree with what you're saying. I've been dealing with my daughter's pa for 14 years now, and I feel like a lot of the people who post in that group might be better served in this forum. I have replied to some things, but there are a lot of new parents there. It's too much to post in a FB comment. Maybe I will pm people and point them here - if I think they would welcome it.
Quote from: SkyRibbons on June 22, 2013, 04:24:04 PM
Mc - I belong to that group, too. I agree with what you're saying. I've been dealing with my daughter's pa for 14 years now, and I feel like a lot of the people who post in that group might be better served in this forum. I have replied to some things, but there are a lot of new parents there. It's too much to post in a FB comment. Maybe I will pm people and point them here - if I think they would welcome it.
Have you seen the group creator's post today about the "tone" of the group (and how facts can be "subjective")?
I just read the Wendy's thread - per Wendy's corporate, individual stores are not to be using peanut oil (makes no sense from an expense standpoint). The shops that tell me they use peanut oil, when I am pretty sure they don't (yes I know Chicfila and Five Guys do), are ones that don't want to be bothered to serve allergic folks so they give that as a standard answer. Been there, done that.
I also hate that one person is saying no one making minimum wage can serve you safely. What a stupid blanket statement.
Indeed, YKW-- a facility that doesn't USE your allergen on the premises is going to have no trouble at all.
And one that has it everywhere? Even the manager would (hopefully) tell you that there's just no way, and most of them are certainly pulling down better than minimum.
<sigh>
Lots of judgment on the FB group today. Yikes.
There's always G+ and path to proliferate, and they might actually be better. I'm anti-FB but not anti-social media.
There are people on the fb group that feed may contains. Only thing is, when someone asks about a food they'll say "oh it's safe" without mentioning that they give their child may contains. Dangerous stuff.
Well, that isn't MUCH different than most places, honestly. We have people here who live with pretty different threshold doses and have lifestyle modifications that reflect those differences.
I guess the only difference is that most of our most prolific posters often ASK about it in threads where there is a question.
I see it a lot more on the FB group and a lot of simple 'it's safe' statements. I know it's up to everyone to do their own checking but it still bugs me. :P
Today someone said that nestle crunch bars are safe. I guess if it was me, I'd say "it has a warning but we haven't had trouble with it" etc. She did eventually say that but after someone asked for clarification.
In my mind the one trait we all share here is we ultimately care more if we are objectively accurate and precise rather than subjectively right.
Yeah, more explicit, detailed information is more useful, basically.
I have only looked there a little but was put off by the arguing and then put off by a time one person mentioned that a particular food was free of milk, egg, peanut and tree nut and got rebuked because the board is only about peanuts and they can't be responsible for keeping track of milk and eggs and other allergens. It was just extra info and wasn't something anyone had to keep track of.
I would not like seeing people say 'may contains' are safe. I think that's very dangerous.
Quote from: Jessica on July 19, 2013, 05:07:48 PM
I see it a lot more on the FB group and a lot of simple 'it's safe' statements. I know it's up to everyone to do their own checking but it still bugs me. :P
Today someone said that nestle crunch bars are safe. I guess if it was me, I'd say "it has a warning but we haven't had trouble with it" etc. She did eventually say that but after someone asked for clarification.
Nestle Crunch is safe? That is not a wise thing for that individual to say, as it definitely is made on equipment that processes peanuts. I never eat it, as there could be cross contamination as per the label.
I just checked the Nestle Canada web site and this is what it says about Nestle Crunch which definitely is not safe:
Ingredients- MILK CHOCOLATE (SUGAR, UNSWEETENED CHOCOLATE, COCOA BUTTER, MILK INGREDIENTS, LACTOSE, SOYA LECITHIN, POLYGLYCEROL POLYRICINOLEATE, ARTIFICIAL FLAVOUR), RICE CRISPS (RICE FLOUR, SUGAR, MODIFIED PALM OIL, GLUCOSE, SALT, CALCIUM CARBONATE). MADE ON EQUIPMENT THAT ALSO PROCESSES PEANUTS/NUTS. CONTAINS TRACES OF WHEAT GLUTEN.
When questioned about it, she said her child has "been cleared for those warnings" and they haven't had a problem. Sounds a bit risky to me. There are also parents there that let their PA children eat plain M&Ms which would scare the crap out of me as well.
Then there are some that go in the opposite direction, like the one I posted about when I asked about the nestle ca candy bars that said she would not let her child have the full size candy because there was no nut free symbol, which meant no 100% guarantee, even though they label super well.
I kind of look at that sort of thing and figure that unless they are proselytizing that POV, it's not really any of my business what someone's personal comfort zone looks like. Assuming that they are reasonably aware of what they are doing, I mean.
I can't assume that someone who is presented with a particular set of facts is necessarily going to interpret them the same way that I do.
There's fact, there's theory, and there's conclusion/hypothesis.
I figure that as long as the facts and theory are being shared, I can offer my opinion on the latter, state why I think it's defensible, but ultimately, that's that.
I have no doubt that some allergists are telling some patients that 'may contains' (or perhaps-- PARTICULAR may-contains) are okay. With a high-enough threshold, that risk may be reasonable for some people and some manufactured items. There is increasing evidence to suggest that excessive avoidance may be as bad as inadequate avoidance, though for a different reason... it seems that excessive avoidance is a great way to generate a super-low threshold.
Avoidance is for avoiding reactions, period.
That's not to say that I think that a blanket "may contains are fine" approach is okay. Clearly it isn't-- because those levels are wildly variable, and it's basically playing Russian Roulette with an allergen, doing that. There are a small handful of manufactured items with fairly constant levels of contamination, though-- and I think that M&M's may be one of those things. I also suspect (but do not know) that some packaged soups and Kraft marshmallows are also among those things. My DD whose threshold just naturally seems to be that low reacts to those things every time. I do NOT recommend that people who have tolerated those things just fine remove them from their diets, however.
<shrug> It's just so individual. It's arrogant for me to assume that I know more about a child's sensitivity than his/her parent and physician, though... I mean, I may suspect that a physician is not entirely competent (and do often advise that people seek second opinions) or that a parent is having emotional baggage get in the way of effective management... but that is different than thinking that I know BETTER than Mom or Dad. After all, I don't know the full backstory from just a few posts on the internet, and probably never will. I have to assume that they have reasons and that they love their child. :)
Overall I agree, CM. I think the thing is that the current standard of care is that if there is any type of warning to avoid. That's the overall, general advice that food allergy organizations, etc all recommend. However, there are certainly cases where people are told to eat may contains. My son is one example now that he can eat baked milk. He can also eat some may contains, depending on a few things. May contain whipped cream--no thanks. may contain other forms of milk, for the most part yes, just fine for DS.
In the case of the FB page if it is a person asking, 'is such and such safe' or 'what types of chocolate bars (or whatever) are safe?' and someone replies that something is safe without any mention of an allergen warning on the product or any disclaimer I think that is quite dangerous. There are many new people who do not have allergists and have pediatricians, ENTs and other docs who don't know FAs well who would not tell them to avoid may contains. There are people who falsely think that 'shared equip' is more dangerous than 'same facility' when there is no standard definition for either type of warning and they can both mean risk. I think the FDA study found same facility had a higher % of xcontam than shared equip.
So, given that I would say that the situation is dangerous. I'm certainly not a doctor or a medical expert. But the blind leading the blind on a topic like this scares me. I think so will end up having reactions as a result.
And I could be wrong but it seems that you may not be able to state your opinion at that site. People were told they were being bossy for telling others that may contains were not safe and other things. It seemed that some people had posted things I find very unsafe and others posted back and told them so and were told that wasn't OK.
There is a grey area and all that and I am of course open to differences in individuals. My son has differences in how he treats his own FAs from allergen to allergen based on reaction history, test results and our allergist's advice. So, yes, I agree with you overall but I don't think that is exactly how it is working at that site and i see accidents waiting to happen as a result. HOpe not but that's what I see.
Agreed-- and that's where it runs into trouble for me-- to proselytize or fail to adequately explain the conditional logic behind a statement. Unqualified "this is safe" or "this is unsafe" doesn't really fly with me...
there has to be a logical reason behind it, IMO, and as often as not, it's related to an individual sensitivity or history.
I don't trash Kraft or Hain to people who have had good luck with them-- just make it known that we haven't, and why I suspect that this is so. I also definitely don't encourage others to buy bulk... though we do and have for years. ;)
If someone asks me "is such-and-such safe" my answer is "that depends." Always.
I think part of the problem is fb groups are not easy to look up old info posted. Here things can be somewhat compartmentalized...not so on fb.
That is a large part of why I do NOT encourage a lot of allergy chatting on our fb page. Also, I like that here we have a lot of people with different points of views and experiences. And when someone appears to be spamming with incorrect info, they get called out my multiple people that I know and trust. (Not just mods....everyone here cares and many will speak up.)
CM - What do you buy in bulk?
IME when people say such and such food is 'safe' it seems to be based on reaction history more often than someone having actually taken the time to call the company and ask questions. Not always, there are a lot of people who contact companies and ask questions but many don't do this. And those who don't do this should not be saying, "such and such is safe" in *my* opinion. I say that as someone who didn't used to call companies and had their child have serious reactions, even ana from cross contamination. My son had eaten some foods with no reaction for years. I know now that we were just plain lucky. Now, if you asked people, would you eat a food if you have a chance to have anaphylaxis from it every few years you might get a range of replies but my feeling is, 'no, thank you. We will skip that food.' I consider a food like that unsafe. And of course risk could be very different from that. It could be the very next time we eat the food that it causes ana again rather than a few years later. There are foods that don't clean for non-top 8 at all and so if you get a batch made right after a non top 8 was run it could have 100% chance to cause ana, while later batches might have zero risk.
I personally think it is good for people to know that you could go years eating something with no reaction but that this alone doesn't mean the food is for sure safe and that xcontam can still happen so it is a good idea to call companies if you want to avoid situations like what my son experienced before I started calling companies. Doesn't mean everyone will or should start calling but just that it is good to know this is a possibility (xcontam in a food that seems safe based only on eating it.)
I agree Jessica. Posting a blank statement that something is safe is dangerous.
And there are lots of newbies in that group.
I don't follow FA groups or FB groups or FA mom blogs but for me the larger danger is the mismanagement of reactions. FARE gets an A+ from me in its new form which as good as it is can't seem to get the message out to that last entrenched segment that either doesn't accept anaphylaxis as defined or flat out doesn't want to deal with anaphylaxis is totally happening.
Food manufacturing, living with allergens in home or not, all personal risk calculus. Treatment of anaphylaxis and acknowledging it as such when and where it happens, less room for interpretation there. The whole only throat closing as a sole requirement, or "just" pukes and gets hives, etc. We have to consider that people are really getting this type of info from a doctor. There's a reason some of us carry the anaphylaxis grading chart and EAPs on us.
Hey, as to definition of anaphylaxis and when/if to use Epi, I VERY recently had allergist flat out tell us that "only hives" would require that breathing be affected in order to need Epi.
Now, mind you, these were hives that were not just localized due to contact (systemic -- trunk, inside elbows and back of knees, face around mouth) -- this was recent contact that became ingestion and was systemic hives for the child with the lifelong history of severe reactions. Had I been the PIC (parent in charge) at the time, I would have Epi'd-and-911'd. The child and PIC chose route of Benadryl with wait-and-see -- which is against most of what we've been told to do previously by this and other allergists.
I'm weary of the mixed messages and the "rules" that seem to change with the tides.
Weary.
And more importantly, confused. Even after all these years.
Sorry, veering off topic . . . .
DS1's idiot allergist told me that may contains and processed on's were overlabeling and we didn't need to avoid. And if he did react, well that is why you have an epi pen.
Uhhh, pardon me but I view epi's as car insurance - we have to have it, it's a good thing if we need it but I would rather not ever have to use it, kwim?
Now, if I was to post here and have in my siggy that we do not avoid "may contains" or "processed on's" that would be one thing. But that group is aimed towards people who may be new or who may not read labels all the way through. To post that Nestle Crunch Bars are safe because you have been cleared to not avoid, does not help someone who does need to.
I made a horrific mistake years ago when I gave my son Canadian Smarties. I kept reading about them here so I gave them to DS1 in the car without reading the label (huge errors in judgement - new food in the car without reading a label). Problem is that Canadian Smarties are safe - for those with a peanut allergy, not for those with a wheat allergy. It was my own fault and I know that. But I had in my head that they were safe for him because I read about it.
Quote from: YouKnowWho on July 20, 2013, 10:08:37 PM
Problem is that Canadian Smarties are safe - for those with a peanut allergy, not for those with a wheat allergy.
Yes, Nestle Canada Aero, Kit Kat, Smarties, Coffee Crisp, and Mirage are all peanut-free. But only Aero & Mirage are wheat free.
And Mars bars are peanut-free.. but contain egg.
Always a challenge keeping track of what is safe with multiple food allergies, as what is peanut-free may contain other allergens.
We have to avoid many gluten-free products. My daughter is wheat allergic, but many gluten free products contain pea protien (she is legume allergic) or nut flours (she is nut allergic) so the gluten-free products are often not okay for us
OMG...somone posted the letter they sent to their son's kindergarten teacher. This person has decided not to impose on the other families in her child's class and to have her child manage his allergy. Most of the posts about it are in support of her position. As others pointed out, though, her approach is not feasible for those who are airborne reactive (but perhaps more commonly, contact reactive).
I have to leave the group today. There is just no way. Someone kindly posted that people may want to check products out for themselves and not rely on others (which given someone posted about a "may contains" being fine is not a bad idea). As a result she got a tongue lashing. And then people were horrified that a life guard was eating nuts and might have to possibly give CPR. Ummm, nuts are not the only allergens out there and what would you like them to eat? Someone posted that but apparently no, nut allergies are much more worse than any other allergies.
Her response is troublesome and unfortunate.
Ouch. :-[
Wow. Read this horrifying story of what cam happen when Epi is delayed--and by several medical professionals!!! Look for the second post in this, by Angel Solgot. Wow. I can't believe the doctor wanted to wait. Hopefully that would not happen now.
https://www.facebook.com/groups/POKWASPeanutAllergy/permalink/10151589089902876/ (https://www.facebook.com/groups/POKWASPeanutAllergy/permalink/10151589089902876/)
OMG, someone on that Parents of Children with Severe Peanut Allergy trotted out that horrible Meredith Broussard article as FACT about the number of food allergy deaths per year. This person parrotted Broussard and said it's fewer than 200 per year. She linked to a Huffpo article to refute my link to aafa.org. Thankfully, Sloan Miller interviewed a doctor who took Broussard to task for that stat.
Seriously? Huffpo as a source of facts? What's next, citing Wikipedia? It never ceases to amaze me when people cannot look at source material critically.
.
Shades of yesteryear . . .
The group owner posted a link to this board (in a thread where a different specific link to here was posted).
I think the owner of the group is doing a good thing by reaching out to folks in a way that reaches them. I am just concerned by some of the posts by members.