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.

100 days of mostly non-events

Sep 4, 2013
Day 100

It's been a while, but here's your status check on not so little Patrick.  2 weeks ago he was supposed to go up to 125mg, but he was fighting an infection (unrelated) and had a nasty cough and cold.  So we went to see the allergist as usual but they decided the safe course was to lower his dose for 2 weeks.  So we went back down to 75mg for 2 weeks.  Have to remind ourselves it's not a race, and that being safe is more important than doing this quickly.


Today is day 100!  And appropriately, we've gone back up to 100mg.

All is well, we're juggling lots of appointments (nothing new), and Patrick is bored at the allergist.  I'll take it.  Bored at the allergist is way better than excitement at the allergist.

We found out that Erin has a kid in her class with a severe peanut allergy, so she's getting only peanut safe snacks at school now too.  (the preschool is nut free).  Thankfully we already have a lot of that stuff for P, so it's not a big deal.  If she starts asking for peanut butter and jelly, we will get some wowbutter or sunbutter.  They keep using food as a reward for good behavior, so we went on amazon and bought some super cheap party favor stuff to donate to the goodie box.  I'd rather do that than have her always bringing home candy (half of which her brother can't have).

This is getting easier day by day, week by week, etc... The kids are more aware, we are more confident, and our circle of friends, schools, etc... that we feel are safe is always growing.

Happy summer everyone!

Day 21 - croutons, cookies, and summer colds, OH MY

June 17, 2013

Warning - here begins my rambling:
On the mind today after conversations with several good friends, some of the less obvious culprits for tree nut allergens are:

• Croutons - no idea why, but these are REALLY hard to find that don't say "processed in a facility with"...
• Corn chips (tortilla chips) - a few brands we can't use
• Pretzels - this one seemed odd to me but some of them used shared equipment
• Cereal Bars - most brands also make granola bars and most granola contains nuts we can't have
• salad dressings!
• breads - the fancier the bread, the more likely they make a nutty bread variety on the same equipment.  The cheap breads tend to be fine but we always double check the labels (and double check each other).

Essentially, if it has a label, READ IT.  If it doesn't have a label and you didn't make it or it didn't grow that way, DON'T EAT IT.  Ask those awkward questions (politely!) of the waiter about what's in the dessert crust (get the chef), or the restaurant owner, or your friends.  Be kind, but ask.  If you aren't sure, leave something off your kid's plate.  That trip to the ER is not worth letting them have a bite of that cookie they are begging for.  Go get the safe ones out of the car.

Some favorite brands that are safe for P:

• Walgreens granola choc chip bars for emergency kid food - these are processed with peanuts and almonds, but we can have both of those
• Enjoy Life Foods - (ELF) - their soft cookies are the best top 8 allergen free cookies I've ever tasted.  We particularly like the snickerdoodles.  They don't taste like the snickerdoodles I grew up with, but they are delicious.  
• Enjoy Life Foods - bars - hard to find - but so far yummy.  The cherry cobbler bars were a hit for the race last weekend with the little man.  I'm not a fan of lots of processed foods but sometimes it's nice to have something that can go in the stroller for emergency snacks other than squeeze applesauce!
• Lucy's cookies - major allergen free - can get in small snack packs of 3 cookies.  I keep these in the car for restaurant dilemmas (if he can't have ANY of the desserts), or if everyone else can have something that he can't.  (This recently happened at Moe's after a playdate in the park, every other kid is eating a cookie and he couldn't have any of the three options).  Up until now he'd just take a lollipop but he's finally starting to care about being different.  So yay for Lucy's cookies or tiny oreo packs.  (ELF cookies taste better but don't have small packs).  You can get 18 of the Lucy's 3-packs on amazon for a good deal if you keep an eye on the price. (variety pack)  That will last us a VERY long time. 

Other random things - I'm getting coupons and emails from all sorts of allergy things lately.  FARE (the food allergy website) sends out newsletters.  The one today had links to medic alert bracelets.  We have an engraved medical ID, but so far I haven't seen the need to pay for a monthly service for this.  Mabel's labels has some cool allergy alert stickers that they print your specific info onto.  (good for short term things like the preschool at church).  I still tell them every single time we drop him off and write it on his nametag on his back to make sure they don't give him food outside of the stuff they show us before we leave.  (usually goldfish and apple juice).  

Little by little P seems to finally be grasping that this allergy thing means something.  This is real progress from six months ago.  He's talking to friends at preschool about it, and he can now (finally!) tell you that he's allergic to walnuts, pecans, and hazelnuts.  (He used to pick something at random and tell you he was allergic to bananas.... (he's not!))  And, (hooray!),  you can more or less understand him.  (Yay speech therapy!)  I'll take it.  He's recently decided that his allergy bracelet is indeed a bracelet with his info on it and not a watch.  (He has been very determined for a while that he needs his watch!) His new teachers (new class at school) are adjusting to him pretty well too.  One of them has a kid slightly older at the school that has an allergy.  Both seem fine with the idea of actually using an epi auto injector.  Which is great, because those things are intimidating.  I do find it odd that epinephrine is stored in the classroom, but benadryl is at the front desk.  Don't get me wrong, I'm THRILLED that the epinephrine is even IN the classrooms.  Time matters if you need one of those things.  Our old daycare kept them locked up in the office.  I wouldn't want a teacher to have to hesitate to leave a class alone to run to the office or call up there and have someone not be right there.  I'd rather they err on the side of giving him the shot if they think he needs it and having it 4 feet away.  They also have photo cards on the medicine cabinet in the room.  Each kid with an allergy has a card with a photo, list of allergies, and list of meds.  (So a sub or floater will know at a very quick glance which kid and what meds are available in the room and up front at the main desk).  

In other news, I noticed P had puffy eyes when I picked him up and he was coughing on the way home.  That's NOT a good sign with this little guy, who goes from 0 to wheezing often in 4 hours or less.  I gave him Benadryl tonight to help as an antihistamine, and the cough was deep enough we broke out the nebulizer and Xopenex.  I'd have used the albuterol but it winds him up so badly I figured this was the lesser of the two evils.  He has a better chance of getting to sleep on Xopenex.   Now I have to stop from going in every hour to see if he's breathing ok.  At least we have a nebulizer and we're really close to a neighborhood ER.  Asthma and allergies they can certainly handle! And if he's coughing in the morning the allergist is going to get a call before we dose him.  Summer cold plus asthma plus allergen makes mom a nervous nellie.  

What else.. the excema is still there and mild, no real issue here.  He's taking his daily walnut dose with applesauce like a champ.  He doesn't bat an eye anymore - how quickly normal changes and how resilient and adaptive little kids can be!

Thanks to all our friends and family for your kind words (and for putting up with my long winded rambles).  Love you all!