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

Kindy, trackout, green bees, and sight words

Nov 6, 2014
1 year and 166 days
2400mg (maintenance dose)

We've made it through the first quarter and the first track outs.  Everyone has stayed safe, we've built a rapport with the teacher, and been on one field trip.

I may fall over now.  :)  It's amazing the time, emails, effort, and prayers that went into those two simple little sentences.  We've been through a lot.  Getting the allergy plan in place was a lot of wrecked nerves, gentle pushes, and repeated conversations.  We've been blessed with a teacher that gets it and emails us to ask about brought in snacks (unexpected).  There've been some ups and downs.  A parent said they were bringing in a birthday treat but would never respond what it was going to be.  So... do you send a safe cupcake and hope they didn't bring fruit?  We guessed right and sent a cupcake, but your kid is either just fine, or the envy of the class, or the only one without a sweet treat.  I would prefer better than 1 in 3 odds of doing it right ;)  I would prefer everyone stop bringing in food, but it was made clear to me they wouldn't restrict what came into the room by the nurse and the assistant principal.   I am grateful to his wonderful teacher that tries to keep us all updated.  I know there are three allergy kiddos in his class.  One is us (tree nut), one is peanut, and I'm not sure on the other one yet.   But we make absolutely sure never to send any peanut products at all.  I know he's usually seated with the other two kids (that's how we figured out who they were).

Track out camps were a bit nerve wracking but we made it!  Camp 1 we emailed with details about his first two reactions and said absolutely no food sharing at all, and no outside food that wasn't a piece of fruit.  They agreed immediately and went into a crazy level of detail with forms that I had to fax to the allergist and medication agreements.  I saw their schedule later (accidentally tucked into his papers that came home one day), and was AMAZED to see the # of kids that had allergies and what they were.  But they had low ratios of kids to adults, he loved it, and they had clearly made sure every teacher for every segment of the day knew which kids had what allergies.   And they did it quietly, gently.  I may be in love with this camp.  They teach them musical instruments, art, play outside, and all sorts of other fun stuff.  Can I get to go here?  It was nice to find a place we can trust on the first try!  (We knew other allergy parents that had gone there and were very happy so we had some inside info).

Week two we took a vacation to the house of mouse (Disney) and had some great food experiences and some not so great.  Never anything that put us at risk, but Disney is famous for accommodating allergies and at least twice I didn't feel that was really the case.  But for a whole week of eating out that's pretty amazing. :)  We will email the special diets program and let them know about the good and the bad, but we had a blast.  We had our first ice cream parlor experience (that went over quite well!), and another time got frozen apple juice and safe cinnamon buns.  Lots of research and stalking of boards on facebook (Disney Chefs Rock Food Allergies is the primary one I used).  Tons of good info and nuggets that only matter to the food allergy community, but that can really make the trip a lot more fun and inclusive.

Week three both kiddos were at a sports camp - their policies were so ... laid back it was stunning compared to camp 1.  We talked to the coaches at length and they had all been trained on epinephrine and apparently deal with this pretty regularly.  I did figure out after day one they thought he was also allergic to peanuts and he more or less ate lunch by himself.  I asked them not to do that, but asked that he sit with his sister with other kids.  I don't know if he chose that on day one or if they did.  He didn't seem to be upset about it so we didn't make a big deal about it, but I did tell them to be careful not to exclude him.  That word seemed to make it click.  He loved it and was totally worn out at the end of each day.  He got a stomach bug the end of the week which wasn't so fun.  I'll be careful with these guys but they clearly train their coaches, so it was good.   Active stuff is great :)

Stomach bug was not so fun.  Poor little man is a trooper though.  I finally had to him in to get something for the nausea so we didn't mess up our OIT.  They took one look at mr totally limp and pathetic (he didn't MOVE for the whole appointment) and gave him chewable zofran tablets.  As soon as we got his stomach to stop heaving he recovered quickly and was able to keep down his doses.  By day 2 he was asking for guacamole, so I figured he was improving fast.  We avoided dairy for a few days and all was well.

Halloween went off well - we dumped (we thought!) all the unsafe candy before they came in and sent it back out.  We also participated in the Teal Pumpkin Project and had toys and non-food items in a separate bowl available.  The kids liked painting the pumpkin teal and REALLY liked picking out items for that bowl at the store.   One scare was the morning after Halloween, the kids were up before we were and discussed eating candy without us and decided that was a bad idea.  I praised them later for that, especially when I realized the candy they wanted to eat was from a goody bag (and hadn't been screened yet!)  I said several prayers when I read the labels and found TWO items that would have appeared safe (smartie type monster shaped candies) that said processed on a line with walnuts. When I got my heart rate back under control, we had a long talk about why they did the right thing, and showed them the label, then promptly trashed the candy.  Hooray for them doing the smart choice!

Aside from the OIT (which he doesn't really understand yet), his world revolves around play, sight words, getting green behavior bumblebees at school, trading in said bees for prizes, and beginning math.   I swear we were learning colors in K?  But he's making it.  Couldn't be more proud of this tough little fellow.  Honestly I might be even more proud of his big sister for understanding far better than he does the risks that he faces.  She's a bit of a nervous nellie, but she loves him fiercely and watches out for him. When she's not busy torturing him or telling him how to do everything of course!

Thanks to all the friends, neighbors, family, and allergy peeps that have cheered and prayed for us on this road.  It's long and slow and fraught with nerves, but it's been great to be loved along the way.  Onward!  Maybe one day we'll get into that clinical trial and speed up this process.  I can dream anyway.

Free book! - Nov 6 and 7 - free kindle kids book  about food allergies.

Fierce Monster and Max from "Where the Wild Things Are"

Alli

school days are almost here!

June 20, 2014
1 year! (and 27 days!)

It's been a long slow process but it's neat to look back and realize we've been at OIT (oral immunotherapy) a full year with no reactions.  That's pretty amazing!  The little man is doing fine and excited that school is about a month away.  Crazy.

The allergy planning at school is complete!  Hooray!!! There are papers, on file, signed, in the office.  It took a lot of emails, a lot of patience, and several face to face meetings, but it's done.  The main points (see previous post):

• Subs are trained on epinephrine, but only at their initial hiring.  This is frustrating, but it's better than never.
• The bus drivers will be trained (as a group), by the nurse before school starts
• We will have at least 4 epinephrine devices (for us that's the Auvi-Q Jr) at school.  The "red bag" that follows him class to class (1 or 2), in the office(2), and …)
• He will be allowed to wear his spibelt with an Auvi-Q(1)!  (for those in the allergy community this means he can self-carry, and was a BIG concern for us).  This one is HUGE.
• After much discussion, he can have his epi on the bus, and it doesn't have to go into his backpack.  He can continue to wear it in his spibelt under his shirt.  

This now covers the concerns about the bus, the bus driver, most of the concerns about substitute teachers, access to epinephrine by a bunch of 5 year olds (if it's in his backpack), and transit to preschool aftercare.  Patience and determination (and honestly just asking calm questions!) really paid off.  The allergist was not going to help us push for an epi on him (to cover the bus or red bag missing scenario), but we feel much better that we got this in his plan and he will have access to his meds on the bus/all the time.  May he never ever need them!

I am sure he will be looked after at school.  But it's really hard to leave a nut free day care and put him in a community setting where we will never meet some of the folks that take care of him.  We have done everything we can to make sure that his meds are within easy reach and that he knows what to do.  The nurse will make sure the staff knows what to do.  I have no doubt he will be loved at school, he is in an awesome place where he loves with abandon, with his whole body, his whole heart.  He hugs his teachers goodbye every day, he lights up when he sees us, he runs to us when we get to preschool and jumps into our arms.  He has an infectious smile, a belly laugh, is surprisingly insightful and observant.  Kids… they are amazing.  He also has a wicked smart big sister to chase after and learn from.  She will do anything to keep him safe (and maybe torture him a little in the background).  They are worth every tantrum, every fear, ever sadness over their hurts.  It's a big step to turn them loose.  We will have to do it in ever increasing stages.  He's ready.

Not sure mom is :)

Topping out on walnut for a while...

May 14, 2014
Day 355 (Almost a year!)

Well we hit the top dose today!  Woohoo!  2400mg of walnut flour.  We'll stay at this dose for a year.  I asked the allergist why it wasn't higher, and apparently this is the walnut protein equivalent of several nuts.  That was a shock, I had no idea it wasn't a one for one weight calculation.  (I thought we were still at less than one nut).  Everything seemed fine, we saw the somewhat normal redness right under his eyes, but no symptoms.  That didn't last long (also normal for him).  So we'll go in once a month now for a dose in office/monitoring/catch up.  After that year we will have his IgE levels retested and see if they've dropped enough to move on to the next nut.

That was a bit unexpected, but we've been so busy talking about school readiness that we missed that we were so close to this milestone :)

On that note - we've met with the elementary school nurse and assistant principal to discuss how we keep our little guy safe starting in two months (yikes!)  WCPSS (Wake County) has an allergy plan and an asthma plan that looks a bit like a choose your own adventure book (where you choose how you want them to handle certain situations like the lunch table and outside food).  Some of the choices were really non choices, and feel a little exclusive, but I get how a standard is much easier to implement.  (For instance he has to be able to either make his own food choices exclusive of an adult's input, or he can only eat food brought from home with no exceptions).  That's not a choice - he can't read labels, doesn't know all the places nuts can hide, and he's really too young to say no to all the tempting possibilities that will come up at school.  So only home food - always.  The bad part about that is the social exclusion from every party, event, candy handout, etc… for the whole year.  We're going to try to be the room parents so that we can offer to buy safe food/snacks for parties, but things will come up. We can have ice cream or things like frozen cupcakes stored at school and a snack box for the teacher to use in case of those surprise events, but he'll be different every time unless we bring in the food for the class.  So far he hasn't quite realized that he's going to be that kid.  It's time to start talking about it though, he has to get that he can't cheat the odds and take a bite of something.  We'd really prefer never to have to visit the ER again with him struggling to breathe.  At least all of the permanent staff and bus drivers are trained to use epinephrine. (yay!)  It also sounds like he can have an epi in room with him that will follow him around the school (they call this the red bag and in lower grades it follows the class everywhere - diabetes meds, epis, inhalers only).

The biggest points of contention so far (and they didn't really feel like an argument just things we have to sort out) are the school bus (does he self-carry on the bus and where is it kept), and what happens if there is a substitute (they are not epi-trained, anaphylaxis trained).  The bus I think we can sort out with them (and with the after care at the preschool).  They are willing for him to have it on him and that's a big deal.   Everyone likes to say the kids aren't allowed to eat on the bus.  Well, that's irrelevant since we are all well aware that they DO eat on the bus.  Some of them are on the bus for over an hour, we get it.  But we need for there to be an epi available.  Who knows what might be smeared on a seat where he puts his hands, or if he might give in and take a bite of something tempting?  The school wants it in his backpack front pocket, but that's too accessible to everyone IMHO.  We want it on his body (in a spi-belt).  That's what he's been wearing for months (with a trainer epinephrine injector with no needle).  It's under his shirt, small, and harder for another kid to get their hands on it.  The substitute issue is interesting.  For his Kindy year it's probably moot (there is an aide assigned to the class full time too, and the chance of them both being out is very low).  This is something the schools need to figure out.  Subs are not "normal" school employees, there are over 1000 in this county, and they are not epi trained (at least not unless you get lucky).  Leaving him in a class with a sub who doesn't know how to recognize or treat anaphylaxis at this age is not an option we're ok with.  The school didn't really have a good answer but said they'd look into it.   If they can't figure out something we may be picking him up if we find out they have a sub (and we may be asking for it in writing that they call us if his teacher and aide are both out).  We're willing to train a sub, but they aren't sure it will be allowed.  Ah the frustrations of HIPPA/FERPA, government policies, and ill thought out scenarios.

Other big news - for the time being we got denied for the trial at Stanford we were hoping to get into - but we're in their system and are watching (ok maybe stalking a little) as they continue to grow that research into Xolair and mass desensitizations.  Very very interesting stuff!

We did an allergy friendly easter egg hunt this year (no food) and the eldest kiddo at first was not happy until she realized that she was going to get a bunch of little toys instead of candy.  :)  That went well - and it was good to meet some other parents who know what it's like to have to stalk your kiddo at an egg hunt where there might be suspect candy.  We also met another little fellow at the allergist today doing peanut desensitization that I'm sure we'll be seeing every month since we're on the same schedule.

Any friends / fellow parents out there who are looking into this stuff, check out NC FACES on facebook or ping me and I'll get you on the group.  It is awesome to have a place to talk about this part of our world (when Enjoy Life Foods go on sale on zulily or amazon, what baseball games are nut free, how to navigate the local school system, 504 plans, etc…)

Thanks for listening - this one is getting long so I'll stop here and do another update soon!  We are so lucky to have friends and family that help us on this road.  Thank you all, you are blessings to all of us!
Alli

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!

big kid school, free epi training, and allergy cards

Feb 4, 2014
Day 256

Allergies have been high in our minds the last few weeks - we've moved up to 600mg of walnut powder for the daily dose. Tomorrow we go to 700mg at the allergist. It takes a lot of time, but he's thankfully a very agreeable kiddo.  He gets a bag to take whatever toys he wants... and sometimes he entertains everyone with his costumes and antics. This was 2 weeks ago - my little protector!  I hope he stays this agreeable for the years we have of this in our futures!

The superbowl (and of course party with lots of food) - was a great success, and in no small part to the friends (our local family!) that helped make sure he was safe and that everyone knew not to give him food without a parent okaying it.  Our host/hostess sent us this photo of the "baked goods" end of the table before we even GOT to the party.  :)  We also had him wearing allergy alert stickers so that those folks that don't know him would know not to feed him.

In other news, we just signed him to start kindergarden in July where he will join his big sister at the local Elementary school.  EEK.  We are barely starting those conversations with the school, eventually the school nurse, the teacher (we don't know who yet), and the allergist.   It's a LOT of paperwork, planning, and thinking through what makes sense, how to approach people, and how to most importantly keep him safe.  We don't want to induce some crazy burden on the school, but we don't want them to ever need to inject him with an epi.  Heck, I don't want to ever have to inject him!  (again)
This is amazingly stressful to think about leaving the "nut-free" preschool world and having to depend on others (some of whom we will never know), to keep him safe, at an age where he can't quite protect himself (or read the labels).  We have been researching on the parents of kids with food allergy forums (you need to register), went to a 504 plan webinar (you can watch the video), and talking to teachers, other parents, and anyone with any experience in this area.  The allergist was surprisingly negative about a 504 plan (he said a health plan is fine).  Given what we've researched, we don't agree, but we will talk it out with patience and come in with humility to talk to the school.  It's not a demand list, it's supposed to be a discussion to decide how we can all keep him safe, and a document that details what we agree upon.  We have a health plan in place for our eldest, but her life is not in immediate danger if it's not followed.  We will plod slowly down this path and take lots of notes...  And I will try not to shake every time I talk to anyone at the school about leaving him there without his army of protectors.  Gotta let go sometime...

Other cool stuff...
-FREE (used to be a paid training!) Epinephrine/anaphylaxis training online.  This is pretty awesome.  If you have friends with food allergies, take the 20-30 min and do this.  You may have to save them one day, you need to understand what to do and when to do it.  And THANK YOU epi-kit for making it free!
1. Go to http://www.EpiPenTraining.com and click Sign Up.
2. Fill in the Registration Form and agree to the Terms & Conditions.
3. Click Sign Me Up. 
4. A box will appear confirming that your account was created and that you're logged in.
5. Click Continue.
6. Click Begin or Continue Your Training Course.
7. Click Start.

-Allergy cards for restaurants - we dug all over the place and these things are EXPENSIVE and you get two or three laminated cards that you need to remember to get back from the server each time.  We used vistaprint (just picked a business card template), and printed 200 for about $20.  We put his picture on it, and wrote it as a request from him to help keep him safe (people are more careful when they know it's a child that can't protect themselves).  Don't spend your $ on the fancy "allergy" cards.  You can print EXACTLY what you want and get far more of them online from anyplace that makes create your own business cards.  We put emergency info on the back including please don't hesitate to Epi if you see symptoms.  So far it's been VERY well received.  We decided to do this after reading the restaurant blog (see last post).

Much love to you all - it's sometimes a very carefully planned out world we have to live in, but we do it with the support of all of you!
Alli, Daniel, E and P

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.

research notes - what's with all the allergies? 504 suggestions for tree nuts

108th day
Sep 9, 2013

It's been a heavy research week for me - talked to lots of folks about 504 plans and such.  Everything has been calm, although we had to switch to dinnertime dosages so that we have 2 uninterrupted hours to keep an eye on Patrick.  On workdays we don't always have 2 hours of blocked time with him, so we are now keeping doses in the car (in case we go out to dinner or are running REALLY late), and trying to adjust our schedules.

Things of interest:
Discovery Channel documentary on the epidemic of food allergies in America - you can view this online which is awesome.  They have some good stories (and some very scary ones), and talk about OIT therapy at about the 40 minute mark (which is what we are doing with walnuts right now)

State laws for allergies/asthma by state - NC summary and links to the actual legislation

North Carolina law, Section 115C-375.2 (2005), requires local boards of education to adopt policies authorizing students with asthma or anaphylactic reactions to possess and self-administer asthma medication on school property, at school-sponsored events, and in transit to and from school.  These district policies must include certain provisions: 

• written authorization from the student’s parent or guardian permitting the self-administration of medication
• a written statement from the student’s health practitioner verifying the student’s health condition and prescription of medication
• a written treatment plan for emergency protocol provided by the student’s health practitioner
• back-up asthma medication to be kept on file in the school in the event of an emergency

Some salient points about the NC law and why I care:
-We are at greater risk because asthmatic kids are more prone to anaphylactic reactions
-We can let P self-carry his epinephrine injectors - this is unclear in all the Wake County school documents and varies widely by school.  But if we have to fight for it, we have the tools now.
-If a teacher forgets to move his injector around the school with him, he can always have one on him.  They might not have minutes to run and get it.  And if it's not on hand, they are less likely to use it as fast as they should.
-He can carry to/from school, for sports, and field trips.
-schools have to have school wide policies in place for asthma and anaphylaxis (we need both so this is positive and means the staff are more likely to be trained)
-They don't stock unprescribed epinephrine (yet) - but the bill S.B. 700/H.B. 824 is still pending. 

I'm sure it won't be a walk in the park, but having help navigating the minefield of rules has been fantastic.

504 notes - I talked to a GREAT lady from the POFAK (parents of food allergic kids) forums who helped me to start a list of accommodation requests that seem reasonable for a 504 plan.  Having a tree nut allergy but NOT peanuts changes the list pretty dramatically.  The risks aren't quite as great for us.  (He might not NEED to sit at a nut free table).  I won't send him to school with peanut butter (but he can eat it at home).  Erin doesn't get PB anymore either, there is one boy in her class with a severe peanut allergy.  Sunbutter works just fine, but we have to watch packaged foods.  (Kashi cereal bars, squeeze applesauce, annie's cheddar bunnies, and seed trail mix packs from peanut free planet are all favorites.  We try to pack our own foods but sometimes you're in a pinch!).

The current idea list - modifying as we talk to more folks and figure out what makes sense:

1. All staff who may supervise kiddo must be epi-trained and able to recognize a reaction.  (this should include bus driver, teacher, aides, lunch, specials staff)

2. Kiddo will self-carry epi-pens in a waist pack.  A backup kit with epi-pens, Benadryl, and rescue inhaler will be in the classroom with the teacher or with the nurse. (2 reasons to have the kid only carry epi: so epi is the only choice available and to eliminate risk of another kiddo getting a hold of the liquid/chewable meds).  If he isn't ready to self-carry, word this for teacher to carry and hand off to specials, lunch, etc.  Remove self-administer - he's too young, and honestly most folks having an allergic reaction feel so bad and can be so out of it that they aren't capable of doing it during a reaction.  We can't count on that, adults should be in charge if that is needed)

3. Staff will supervise handwashing (soap, not hand sanitizer) of each student after snack and lunch time.

4. Staff will sanitize tables and chairs after daily snacks with sanitizing wipes. Anything with actual TN ingredients is not served in the classroom as a group food.

5. Classroom will be food free except for the following: daily snack, birthday parties (kiddo's parents must be notified 3 days in advance), Winter and Valentine's parties.  (We might need to be the room parents, have parents send in money for the parties and then we do all the shopping.  This makes sure everything is safe.)

6. Substitutes that are not trained to use epinephrine: Kiddo will be placed in epi-trained teacher's classroom for the day or epi-trained para/TA will remain with the substitute teacher for the day.

7. Regular substitutes will be epi-trained. (i.e., the ones who do a lot of subbing for the school or who will be there for a long-term sub assignment)

8. Lessons that include food or allergy trigger must use safe brands.  Kiddo's parents shall be given a minimum of one week's notice to research and give approval.  If no safe option or accommodation can be made, the lesson will be replaced.

9. Kiddo will have a treat box kept in the classroom for use as needed.  (Covers when mom forgets to pack a snack, random PTA "surprise" food reward, candy handed out by specials teachers, etc.)

10. Food allergy bullying will not be tolerated.  Any bullying will be handled according to district policy.

11. "No shared mouth instruments, parents will provide a dedicated one as needed". (if they use kazoos, music instruments) - higher risk for peanut allergic kids more than ours.

12. Empty food cartons/cans being reused.  Often teachers will "clean" a nut can to hold group supplies or will stock a housekeeping center with empty real food containers.  Discard any unsafe containers of common allergens (nut jars, trail mix containers)

13. pencil pouch/box for his supplies.  Knowing how often little kids touch faces, stick fingers in their mouths, etc., we felt better keeping kiddo's supplies just for him.  

Notes for approaching teachers: "I know you don't want to have to epi my kiddo and this is one way to reduce the risk/make your job a bit easier" helps a lot.  Most don't want to have to be "the one" who messed up or who had to epi.

lunch arrangements.  Our school has a "nut free table".  Patrick eats PB&J just fine, he probably doesn't need to be isolated.  (Although I wouldn't send PB - I'd use sunbutter or wowbutter, etc...)  He's not airborne allergic to his nuts, it should work for him to sit with his class.  Suggested - sit at the end of the table and the kids next to and across from him can't have obvious TNs. 

Thanks to all the other moms and dads for the recommendations/assist on the idea list - keep them coming!  We will keep a running list until the summer and then sort it out with the school, allergist, etc...

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!

Plans and new injectors and 504s oh my...

Day 81 - Friday
Aug 16, 2013

Warning this one is long - topics: Preschool update, new "action plan" forms that are MUCH easier to read in a hurry, new types of injectors, and public school 504 plans.  If you don't know much about allergies or don't have a school age kid, skip the 504 part, but know it's a lot of stuff to digest/deal with! :)

Preschool news - P's teachers got a kick out of his Bugabees book.  Started good conversations with the kids and the teachers about what allergies mean and don't mean.  (One of the kids asked if they were still allowed to play with the allergy kids and teacher with an allergy).  Better that they ask the funny stuff now!  One of the teachers has a milk allergy, another child has a fish allergy, and one more is allergic to eggs and peanuts.   So he's not the only one in his room.  We ordered a copy for the schools (the preschool and the elementary school).  He's also been wearing his allergy bracelet (he calls it his allergy watch) more often.   It's finally sunk in with his gymnastics coaches (they've stopped giving him candy from the treasure box that he can't eat, and automatically offer him other options - stickers, extra hand (and feet!) stamps, etc...)  That's a relief for me.

Allergy "action" plans - FARE has a new newsletter and a new easier to read, up to date action plan "form" that adheres to the new guidelines.  Simply put - when in doubt, use epinephrine, it saves lives.  Antihistamines (Benadryl) are being moved to a secondary treatment instead of the primary.  Especially in cases where asthma is an added concern (which applies to us).  We're going to talk to the doc about updating our plan using the new form and copying it for preschool, babysitters, his backpack, etc...
It also has photo directions for all three of the current style epinephrine injectors (Epi-pen, Auvi-Q, and Adrenaclick).  The new ones coming on the market has driven the prices WAY down.  Both Epi-pen and Auvi-Q have $0 copay deals going on right now.  Can't beat some competition!  We much prefer the auvi-q for the moment (less force required to inject, time to injection complete is shorter, it talks and tells you what to do, and it has a much smaller form factor).  We carry 2 injectors, dissolvable benadryl tabs, and usually an emergency (albuterol) inhaler with a spacer.  Check out the new action plan if you know folks with allergies, the guidelines have changed (and should!)  The evidence is there.  Epinephrine saves lives, holding off on using it has cost lives.  When it doubt, get the epi out.

I've also been reading about what we're going to have to go through next July (gasp!) when P starts in public school.  Individual Health Plans (IHPs) vs 504 plans or IEPs.  We have an IHP with Erin for trichotillomania/trichophagia, but it's not a binding agreement.  A 504 would force accommodation for a "disability".  And not being able to breathe by ADA (Americans with Disabilities Act), is indeed a disability.  IEPs are considered more special education needs, 504s are considered regular education (with some accommodation).  I hesitated at first to think it was worth the hassle, but then I started reading about teachers that didn't move epinephrine injectors around as the kids shifted to specials (art, PE, music, computers, etc...) and even on field trips.  Lost injectors that couldn't be found at the end of the school year.  Kids being seated next to kids at lunch eating their allergens.  (especially the ones who have had airborne reactions - usually peanuts).  I wasn't reading looking for horror stories, but I was reading looking for how and why and when to do a 504.  It's mind blowing how complicated this can get and all the myriad of options that are out there.  I finally found some good stuff (See #4).

Samples and links:
1) http://www.kidswithfoodallergies.org/ (paid family membership) - resources, schools, Sample 504 plans.  They discuss things like nut free classrooms, trained staff, epinephrine follows student, self-carry options for students, wipedown procedures for desks and cafeteria, handwashing post handling any food for all students in the class, rules for food brought in from the outside, rules for specials (PE, media center, computers, etc..) and field trips, no food sharing, actions / consequences for food allergy bullying, letters to go to all class parents from the principal, relationship with school nurse and/or cafeteria staff.
2) Contact the department of Educations OCR (Office of Civil Rights) - if denied - they are the enforcers for 504 plans.
3) 1702 form (for Wake County, NC - medication form required for albuterol, epinephrine, and benadryl, etc...)
4) Team Anaphalaxis website/guide - great FAQ!
5) You have to request in WRITING a 504 evaluation based on allergy / anaphylaxis diagnosis.
Also need a letter from the allergist stating that anaphylaxis can be fatal and that epinephrine has been prescribed to go with your request for evaluation.  (Proof of eligibility).  Get a 504 approved BEFORE you start talking about accommodations (and only discuss those in a 504 meeting).  504s allow for unique needs (PER student).
6) http://www.ed-center.com/504 (504s vs IEP)

My brain is scrambled, but at least there is good info out there, you just have to sift through it all and take good notes, get organized, and follow your plans.  We'll get there - no rush, but good to know we have a lot of work to do next summer.