Other online groups. Ugh.

Started by Macabre, June 15, 2013, 09:24:02 AM

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ajasfolks2

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 . . . .
Is this where I blame iPhone and cuss like an old fighter pilot's wife?

**(&%@@&%$^%$#^%$#$*&      LOL!!   

YouKnowWho

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.
DS1 - Wheat, rye, barley and egg
DS2 - peanuts
DD -  tree nuts, soy and sunflower
Me - bananas, eggplant, many drugs
Southeast USA

candyguru

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
-----------------------------------------------------------
CANADA, land of maple syrup and poutine
Me:  peanuts, ragweed
DD1:  PRACTICALLY EVERYTHING NOW! peanuts, tree nuts, sesame, eggs, wheat, lentils/peas/beans, leaf mould
DD2:  milk (and avoiding peanuts)

maeve

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).
"Oh, I'm such an unholy mess of a girl."

USA-Virginia
DD allergic to peanuts, tree nuts, and egg; OAS to cantaloupe and cucumber

YouKnowWho

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.
DS1 - Wheat, rye, barley and egg
DS2 - peanuts
DD -  tree nuts, soy and sunflower
Me - bananas, eggplant, many drugs
Southeast USA

lakeswimr


CMdeux

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


Western U.S.

Macabre

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/
Me: Sesame, shellfish, chamomile, sage
DS: Peanuts

maeve

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.
"Oh, I'm such an unholy mess of a girl."

USA-Virginia
DD allergic to peanuts, tree nuts, and egg; OAS to cantaloupe and cucumber

ajasfolks2

#39
.

Shades of yesteryear . . .

Is this where I blame iPhone and cuss like an old fighter pilot's wife?

**(&%@@&%$^%$#^%$#$*&      LOL!!   

Jessica

The group owner posted a link to this board (in a thread where a different specific link to here was posted).
USA
DD18-PA/TNA
DD16 and DS14-NKA

Macabre

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. 
Me: Sesame, shellfish, chamomile, sage
DS: Peanuts

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