Tuesday, March 3, 2015

asthma, school safety, and getting it

March 3, 2015
1 year, 283 days
2400mg walnut protein powder / daily

Sorry it's been a while - maintenance has thankfully been pretty "normal", but that doesn't mine life doesn't throw curveballs at you!

End of November/December - we had our first wheezing incident in over 18 months - we took the little guy into the peds office/urgent care and the oxygen levels were not where they should have been.  We were surprised as the preventative asthma medication (QVAR) had been rock solid up to this point.  Asthma does what it will...  We got him sorted out and medicated appropriately and back to normal, and changed asthma meds to Dulera.  So far so good (and it's been several months of winter which is our tough time).  Dulera seems to work for him, but holy moly it is up there in the expensive prescriptions we have filled category.  2 puffs 2 times a day means that the inhaler lasts 30 days only, and the "insured" price is $258 per inhaler.  Ouch.  Well the new drugs are always the most expensive - gotta pay for the awesome scientists/researchers/trial organizers!  We got optimistic and filled out some forms with the manufacturer for coupons (which was tedious!).   When we filled the script with a coupon, turns out there is an "age range".  If you're not between 12 and 60 you're not eligible.  Well that would have been nice to know before I jumped through all your paperwork hoops (twice!) for a free script and a discount card that he can't use.  Oh well, sometimes you just have to laugh.  He's not wheezing.  And he's still taking 2400mg of walnut a day :)

The only time he worries me with his doses is when is got a cold, virus, etc... Sometimes his face will get flushed and stay that way for an hour or so, then gradually fade.  It's happened during our checkup appointments twice so the allergist has seen it too.  It's never been anything more alarming, but you will sure as heck put down your laptop and stare at your kiddo for 4 hours once you see that happen.  I'm still amazed to watch this little trooper cheerfully eat something that could kill him every single day without a word of complaint.  Now granted, he did not understand this process when we started (he's a young 5)... I'm still not sure he really gets it.  He almost never asks about his doses.  But he also may not remember ever NOT doing them.  He is blissfully unafraid.  Which is great, b/c I've got enough for the both of us!  The doses are no longer the scary thing, but the way he interacts with the world and having to depend on the unknown "other" adults to keep him safe is tough.

Flushed cheeks at allergist dosing in Jan

The worst days - he broke down at breakfast the other day and asked why he's always the ONLY kid in the class that can't have the special treats brought in by other families.   This was a shock as we haven't been notified of special treats in ages... I didn't know he was being left out :(  We will talk to his teacher and see what is going on, we may leave some ice cream for him in the school freezer - I think that might cheer him up.   Worse than feeling sorry for him though is this: there are at least two other kids in the class with peanut and or tree nut allergies.  Are they seriously allowed to eat food brought in my someone other than their own parent or without having it cleared?  Do they not have the allergy plan in place?  (which pretty much defaults to only food from your home in the early grades?)  If I find out about something at school (cookies for valentine's day) - I sent in three small packs of Enjoy Life cookies for the allergy kids (and replied to the whole class parent email so the other parents could give permission).  I really hope they aren't taking risks with their sons and daughters.  The last day of school before christmas was another scary one.  The class was doing a food project (we have a deal where we take turns going in to "help" and to keep him safe for food parties/big projects).  We had sent in safe ice cream cones and assorted candies to decorate the "christmas trees".  Daniel went in to help and poured a mix of safe candies into a bowl for P and took it to his table.  Daniel told the other kids (not knowing that was the nut allergy table) that P was allergic to tree nuts and couldn't share candy bowls.  The other kids piped up that they too were allergic...  Daniel was horrified that no one had told him.  Worse, almost all of the rest of the class candy had already been mixed together and handed out.  So the three kids at P's table had one safe bowl and whatever could be scrounged that hadn't been mixed into the giant class bowl.  I'm glad Daniel was there to keep them safe, but man it would be nice if we could do more things that were not based around food, candy, sugar, ugh.... The head nurse for WCPSS has said they want to phase out food rewards and junk in the classrooms, but I sure don't see that at the individual school level.
There are lots of best days too - finding out he could eat bread at a local irish restaurant, neighbors that read every label for him, friends that text us labels before making food to share with our family.  There are too many to count and remember, and we have to be forever grateful that the good outweigh the bad.  Love wins!

On a different note about WCPSS - we got transferred as a bunch of schools have shifted their base areas to accommodate two new schools.  That has caused it's own mayhem (including a lot of time sorting out options, talking to student assignment (facepalm!), and sometimes looking at houses on the web.  We still don't know for sure yet what school/calendar/track we'll be on but hopefully soon.

Last topic... getting it.
I'm trying to be a better community advocate this year.  I continue to see old standby "safe" products turn unsafe (M&Ms - sigh), or major brands consolidating their production lines to the point that we can't buy staple items in some places b/c of the nut warnings on the labels (Trader Joe's is AWFUL about this, Publix has cross-contamination warnings on 6 foot tall signs in their new cary store, Harris Teeter store branded stuff tends to be unsafe).  So this year I've started writing letters to everyone that might listen.  The bad first:
Trader Joes - I'm not sure they actually even read the letter - the reply I got seemed like they thought I was complaining about a mislabelled product.  The email I sent them was saying please stop moving all your staple foods to shared lines with nuts, b/c I can't shop anymore at your store without need to go to another store afterwards to fill in all the holes.  Chicken stock, pancake mix, cereal bars, etc....
The in between:
Mars candies - M&Ms - while the response was very carefully worded, I think they did understand - they said they would take the concerns to marketing and manufacturing.  I had politely told them to enter this new world and realize allergies are only increasing - it's time to segregate your facilities  - until that time you are now banned from our house and many many nut free schools.
The awesome:
Papa spuds - our veggie/meat delivery service - I ordered a recipe kit recently with brussels sprouts, radishes and grapes.  When my produce box arrive I was unpacking it and the kit fell out - and had a bag of pecans in it.  I gave it away, cleaned the box - washed down anything it might have touched, and emailed the team at papa spuds.  They got it.  REALLY.  They get the risks, the scare of not knowing that it was in ingredient in a kit, and the CC problems that can cause.  They promised to make SURE that any kits they package will be clearly labeled on the website with the nuts that they contain (without having to click down into extended details of things).  I've always loved these guys, I love them even more for doing what is in their power to help.  Raleigh Cary Apex peeps - these are good people.  If you want to try veggie delivery use my name and we all get some free credits! (I think) :)  I'd love to show them a little love for being a company that listens.

As always - thanks to you all - I continued to be humbled by the friends and coworkers with no allergies in their lives that read this and learn what they can about this "club" and how to help keep its members safe.  May you never have to join it, but keep your friends safe!

Much love,
Alli Walton