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

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

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.