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. 

The group owner posted a link to this board (in a thread where a different specific link to here was posted).

.

Shades of yesteryear . . .

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.

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/

Ouch.   

Her response is troublesome and unfortunate. 

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.

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).

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

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.

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 . . . .

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.

I agree Jessica. Posting a blank statement that something is safe is dangerous.

And there are lots of newbies in that group.

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.)