In the news and eating out

Day 167 (dose is 200mg)
Nov 7, 2013

So the good news is that allergies have been in the news a lot the last few weeks. The CDC finally posted voluntary guidelines for schools (with some GREAT resources linked).  That will definitely be in our toolkit when we go to talk to the elementary school this year for P.  Some interesting commentary about kids being allowed to self carry, and clear definitions that an allergy constitutes a disability in the language of the ADA (because anaphylaxis) puts breathing, eating, life at risk.  That language is necessary if you decide to ask for a 504 plan (accommodation based on a disability).

Also cool - the Federal bill for encouraging stock epinephrine in schools passed!  This is awesome.  It encourages schools to have better plans in place, to stock unprescribed epis (25% of school allergy emergencies are for unknown (undiagnosed previously!) allergies.  This might save my non-food allergic kid one day (or yours!) when they discover they do indeed have an allergy.  It doesn't mandate anything, but it helps encourage schools to change (and to get federal funding for doing so).  It needs Obama's signature and then it will become law.  It passed the senate on Oct 31st.

Fun stuff - Halloween went off without a hitch, the kids were spiderman/batman and Doc McStuffins (a vet disney character).  We trick or treated with friends and neighbors, and had a ball.  Everybody was very careful about checking candy, and anything labeled as tree nut unsafe or not labeled went right back in the bucket to hand out (get it out of the house!)  It's just one more time of year where a little more caution is in order, but it went really smoothly.

Eating out - still having good luck (although every now and then waitstaff needs a little extra grilling).  West Park Tavern and JD's are forever on my love list for their extra care.  Not too happy to find out that Papa Murphy's pizza dough is listed as not nut safe, and papa Johns is now selling a cookie pizza that is not nut safe.  The word on the allergy blogosphere is that cross contamination is an issue (dough handling, pizza cutters, etc...)  So looks like both of those pizza options are no longer options.  We don't eat it very often but that stinks.  We're not sure that he'd react with the minute amounts of cross contamination but is it worth the risk?  :(  Panera has also pretty much turned into a CYA restaurant.  They have a great allergen list / book, but plastered on every page is the warning that everything might touch everything so run for your life.  (this is me being snarky and rolling my eyes).  This country is so litigious.  If this keeps up he's never going to be able to eat anywhere without a CYA warning.  Which means he might not take those warnings seriously as he gets older.  That bugs me.  All the store bakeries are out for the same reason.  Those CYA warnings on the labels of everything they sell.  They might run a really clean shop and the risk might be zero.  But when the labels say may contain... you lose customers that can't take that risk.  So maybe long term all the chain restaurants are going to be out (not sure that's a bad thing).  The local eateries tend to have better (less processed) food, and actually care and take extra precautions.

All is well - just have to remember to read the labels, every time.  Ask the waitstaff, every time.  Don't eat without the epis with us.  That used to be hard, which is almost amusing now.  We adjust.

Thanks for traveling this road with us!
Alli, D and the mini waltons

Questions, hickory nuts, good food

October 16, 2013
Day 145

We're up to 175mg!  Crazy to look at the little cups of powder and think that we used to barely be able to see it.  Slow but steady.

Patrick is asking more and more questions - why can't he have bread on his burger at West Park Tavern?  (They get their bread from an outside bakery that makes nut breads too).  What kind of nuts do they use mommy?  Is it in the bread?  Cross contamination is a hard concept for a little one to understand, but we're slowly getting through to him.  Why can't I have the cookie mommy?  (they have nuts in them buddy).  We're trading ice creams for cookies, etc... and he's asking more and more often the why, what, how, explain it to me questions.  (And to my mom - I get it now, I must have driven you insane in elementary school, I know I was that kid!)  He's also questioning friends (adults) that have brought food into the house for dinner - which is great!  He asked about a doughnut this week that he was given for dessert.   Maybe the baked goods problem is finally sinking in?  I can hope...

We're making steady use of the Allergy Eats app on my phone and reading reviews of restaurants and posting them ourselves.  You can't ever make assumptions or be afraid to say clearly that you have an allergy.  Recent comment that made me shake my head... "Well since you said he's severely allergic I checked the bread and he probably shouldn't have that."  (What if I hadn't said severely!?)  Daniel has taken to saying deathly allergic, which feels a bit dramatic but certainly gets their attention!  People also don't always seem to get the difference between a tree nut and a peanut.  They seem to get it better if you just say he's allergic to NUTS.  While that's not entirely true, who cares in the restaurant if it keeps him safe? :)

Places we've loved for their awareness/kindness this month:
West Park Tavern in Cary, NC.  The owner (when he's there) is fantastic and always comes by to sanity check the food ingredients with us.  He's also been awesome about substituting desserts for the kids that are safe (when he's there they never charge us).  Lots of healthy food options (including veggie sides for the kids).  The waitstaff are hit or miss on what they know about allergies, but they've clearly been trained to go talk to the head chef if anyone mentions an allergy.
JD's Tavern in Apex, NC.  Besides that the bartenders here and staff are just plain FUN and the food is good, these guys are very careful about the kid's food whenever we go here.  The kids like to play outside on the patio and the meat/fruit options for the kids are good.  No one bats an eye at mention of food allergies and they always ask if there is anything they aren't sure of.  Someone has done a good job training their staff!
Elevation Burger in Raleigh (Brier Creek) - the cashier deferred immediately to the manager, who was very cautious and had the same concerns we did with the bread (which we didn't eat).  He also came out to check on us when our food came out and to make sure P wasn't too upset about the lack of bread. (I ordered mine without bread too.)

Scary moment: When we were in the mountains with friends and the kids were playing in the driveway, Patrick brought me a handful of cracked open nuts.  My heart stopped for a moment as they looked familiar (similar to walnuts and pecans in the shell and the meat looked similar).  My friend confirmed they were hickory nuts, which are in the same botanical family as walnuts and pecans.  Not a nut you run into often, and it wasn't offered on the bloodwork panel when we had all the nuts tested (they didn't have it).  We had the kids throw away all the nuts and scrubbed everybody with soap all the way up their arms and asked them not to pick up any more nuts other than acorns.  The good news is that there was no reaction from touching them (or the oils).  The allergist says that this does not mean he wouldn't react to touching a walnut or pecan.  (We'd have to test and no one wants to do that!) :)

Thanks to all the friends who have helped us keep sanity - not just with allergens.  We couldn't do this stuff without you guys.  Our communities (of friends!) matter more than they know.