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Posted by Jenns5k
 - May 22, 2015, 08:09:30 PM
I'm in the US, and I used the $100 off coupon from their website, but still paid like $385 or something like that.

We have only been to the allergist once at this point, but yes they did a great job covering the use of the epi and what to do if exposed. Our action plan is that if exposure is known he gets the epi, 5ml of benedryl and 911 immediately even if the reaction has not appeared yet. Otherwise same plan for a reaction that appears without known exposure.
Posted by ninjaroll
 - May 19, 2015, 10:09:22 PM
Quote from: Jenns5k on May 19, 2015, 07:41:52 PM
if I needed to I would (not like you can put a $ on his life, and it's less $ than 1 ambulance ride anyhow:) But is there a trick or anything to getting them cheaper? Or is $400 the norm?

There's a coupon that helps cover out of pocket costs and no, they shouldn't be that much but that may depend on where you reside.

I know your child is young so likely you haven't had much experience with allergists, so bear with me a moment. Did your allergist write out an emergency action plan detailing when to use epinephrine, and that while epinephrine is the first choice in treating anaphylactic episodes that it is merely a time buyer while the ambulance arrives? Did he or she cover biphasic reactions and follow up care like prednisone, including the dire importance of tapering off prednisone if prescribed rather than suddenly halting?

If not, we will urge you to go back to your allergist for these specifics.
Posted by GoingNuts
 - May 19, 2015, 08:14:41 PM
U.S. Or Canada?
Posted by Jenns5k
 - May 19, 2015, 07:41:52 PM
I have never heard that you should have 1 epi per 15 mins, that's great to know! We are luckily very close to town (less than 20 mins to hospital) and I always carry a 2 pack. Wondering if you have any tips on how to get epi's affordably? I honestly can't imagine having more than 1 - 2 pack as I paid $400 for this one! But, obviously if I needed to I would (not like you can put a $ on his life, and it's less $ than 1 ambulance ride anyhow:) But is there a trick or anything to getting them cheaper? Or is $400 the norm?
Posted by Macabre
 - May 19, 2015, 01:53:19 PM
If you were going, you'd need to take enough epis. Basically count on one EpiPen for every 15 minutes it would take for your child to be transported to the ER. We use that with plane trips or anytime we are going to be remote.
Posted by rebekahc
 - May 19, 2015, 01:37:20 PM
One other thing to consider is the younger children eating PB and then putting toys (and everything else) in their mouths.  All that will be contaminated, too - so even if the PB is confined to the kitchen, it will still be spread.  I would also assume all the food in the kitchen is contaminated.
Posted by Jenns5k
 - May 19, 2015, 12:57:41 PM
Thank you for your replies! I just needed a little support from other allergy moms. I'm not sure how sensitive my son is - and don't plan to find out! We are totally peanut free at home and daycare. We always pack his food and prepare it separately. I'm just concerned about him being in an environment where other people have peanut oils on their hands, surfaces etc. Sounds like we will be staying home this weekend, unless they are willing to reconsider.
Posted by Macabre
 - May 19, 2015, 12:33:54 PM
This is something you'll want to familiarize yourself with:

Persistence of peanut allergen on a table surface
http://www.aacijournal.com/content/pdf/1710-1492-9-7.pdf

"Peanut allergen is very robust. Detectable Ara h 1
was present on a table surface for 110 days post
application. There did not appear to be any allergen
degradation over time. Variations in the Ara h 1
levels were likely due to variation of distribution of
the peanut butter on the table surface. Active
cleaning of the table surface appeared to be the only
way of removing the allergen. Even after 110 days,
cleaning the surface with a commercial cleaning wipe
removed the allergen immediately."

The Lysol and Clorox wipes (don't actually contain bleach) are effective and may make the cabin safe enough if peanut is not eaten there while you are there (or again). 

I would wipe all surfaces you can--even the pantry shelves where PB has been--with them. Also consider the silverware drawer. 

It may be that your kiddo is not that sensitive, but my child has had anaphylaxis twice from accidental ingestion at school (touching surfaces and later ingesting the protein picked up). 

I do hope your family becomes understanding. It may take some time educating them.  And our experience here is that some families become welcoming and some unfortunately do not.  :-/
Posted by Linden
 - May 19, 2015, 12:00:47 PM
Hi there and welcome!

I concur with the other posters.  When people make a peanut butter sandwich they generally grab the bread and peanut butter at the same time.  So now the bread and the fridge door are contaminated.  The plate and knife may be grabbed before or after they have grabbed the peanut butter.  So if they open the drawer to get the knife after they got the peanut butter, they just got peanut butter on the drawer.  Then the sandwich is then made and the pb put back in the fridge. There's another cross contamination point. 

Then the person eats the pb sandwich, and when people eat they touch their face, eyes, chair, clothes, table etc.  Plus kids like to wander when they eat, playing with toys and books.  Then crumbs get on the floor which they spread around by walking on them. More cross-contamination. 

People without allergies are completely unaware that they are touching and thereby cross-contaminating everything around them.  Many people cannot be made aware.  Those people just will not believe you that they are doing this.

Bottom line:

1) If there is PB in the house your relatives will not be able to avoid spreading it everywhere.   

2) Since PB is a staple at the cabin, there are already traces of peanut all over the cabin anyway.

It sounds harsh, I know.
Posted by GoingNuts
 - May 19, 2015, 08:20:17 AM
Welcome Jenns!

What Mac said above. The x-contam factor is not going to be manageable. My MIL learned that the hard way.  ;). She didn't believe it was a problem either.

If your little one isn't allergic to Almonds, Barney Butter brand Almond Butter is also a great substitute.

Good luck - educating family members is one of the toughest part of living with FA's.  :console:



Posted by Macabre
 - May 18, 2015, 10:13:49 PM
Totally reasonable. And Sunbutter is great! Da has been at church camps where they substituted Sunbutter and the kids just ate it. I love the stuff so much I wouldn't go back to PB if I could.

Unless they have to deal with this on a daily basis, there's no way they could handle the cross contamination. Really.
Posted by Jenns5k
 - May 18, 2015, 09:41:20 PM
So my in laws have a family cottage where we all stay for long weekends. I have asked them to avoid bringing peanuts/peanut butter because I have a 16 month old with PA. They tell me no, PB is a staple at the cottage. Is it reasonable to ask them to ditch the PB? Or am I being paranoid, as long as they clean up well after themselves it will be fine? (The intention is that the PB/J sandwiches will be eaten by other children ages 1-7 years old.... so I'm concerned about them/toys/touching my son etc as well as cross contamination in the kitchen)