Adventures in snow and allergies

Feb 19, 2014
Day 271

Adventures in allergies....

We've had a good run the last few weeks - no issues to speak of and we've gone up to 900 and today 1200mg of Walnut powder.  One of our buddies (thanks LK!) took a walnut half into their work lab to weigh it so we'd have a better idea of what we are "eating" vs a whole...  The one she weighed was 2.85 grams for a half. (But that's what most folks would call 1 walnut).  So he's up to over 1/3. :)  That's pretty amazing.  Now I still have no idea what would happen with a pecan or hazelnut, and don't intend to find out anytime soon!  But that's great progress...  "Life" insurance - right? We figured this is a 6 year adventure we're on, and we're not even at a year yet.

Our snow adventures were interesting.  The allergist ran low on the walnut powder again two weeks ago.  So the monday before the snowstorm (last week), they didn't have it yet.  Tuesday they had it but closed early b/c of the bad weather coming in (which didn't hit but I don't blame them for closing).  They've changed suppliers for their walnut powder, so maybe this will stop happening now?  I hope so, it causes a LOT of parental stress!  Wed morning they had planned to be closed but we called and caught them there and Daniel zipped over there to get the doses.  Then the 2" in 2 hours hit.  While everybody was trying to get home.  Daniel got stuck in the crazy traffic but thankfully was almost home when all the streets turned into parking lots.  He stopped at the local bank and walked the last bit home with the meds.  You do what you have to do, but on some level you have to laugh.  He came in covered in snow (much to my amusement).  Then thursday the preventative asthma inhaler ran dry and I had to venture to the drugstore (but could easily have walked it).  Why there is no counter on the QVAR inhaler I have no idea, but I'm going to email them.  We also set up an automatic refill on it and they will notify us when it's ready so that won't happen again.

The new walnut powder is coarser than the old, but we kept a very close eye on him for the first dose, and nothing seemed amiss.  He's been on that for the last week or so and it's going fine.

Cool stuff - Epinephrine and school stocking info - this is a pretty darn good article about epinephrine in general, why it's important, and legislation across the US to make it available for the 25% of emergencies that are unknown/new reactions in schools.  Right now depends on where you live if a school nurse or staffer could give your kid an epi shot without a prescribed dose for your child.  Kids have died because these laws weren't clear and epi was available (another child's Rx) and wasn't used.  Stock epi solves that problem.  (unprescribed epinephrine available in schools).  With the increase in allergies, this stuff should be in public places, just like heart defibrillators.  It is the ONLY thing that can stop an anaphylactic allergic reaction.  Now that we're about to enter public schools I'm seeing just how scary the lack of clear policies can be.  NC needs to catch up to the rest of the US and get some clear laws in place to allow stock epinephrine and to protect those that have to administer it.

Fun snow stuff - we finally got the kids skiing this weekend (in NC) - shockingly the conditions were awesome.  We've created two little ski monsters though!  We had no troubles with allergy stuff with ski school, but we had to be creative on how to keep epis in the temp range while skiing.  (inside backpacks under jackets for instance).  It all worked out.

Stay safe friends!

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