Friday, August 16, 2013

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) (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) (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.