September 9, 2013

Changes - the beginning of our school year

Callan was so excited to start Spanish Dual
Immersion Kindergarten.  He even said, "Adios"
to me when it was time to say goodbye.
The first weeks of school have come and gone for my kids.  I knew this would be a transition year with my 5-year-old starting Kindergarten.  However I still seemed to underestimate the stress and worry of preparing my kids for their new year.

School kids, allergies or not, will face some new circumstances with each new year.  The days leading up to the first day of school can definitely be anxious times for kids and their parents: Who will my teacher be?  Will I have friends in my class?  Will there be more homework this year?  Will everything be harder than last year?

When your child happens to have a life-threatening or lifestyle-changing condition like food allergies, the anxiety is amplified exponentially.  The questions above are still relevant but there are even more concerns:  How will my new friend react when he learns I can't sit near him because of this peanut butter?  Will my classmates wash their hands after lunch?  What if someone brings cupcakes to school?  What if I have a reaction at school?  Will my teachers know when I'm having a reaction?

As I always do before a new school year begins, I met with my kids' classroom teachers and the school nurse to review the kids' food allergy action plans (check out the most updated emergency care plan here).  This is a really important step to do every year.  Even if your kids will have the same teacher, same principal and staff, and same afterschool provider, it's critical to remind about your kids' allergies, possible symptoms, careful practices, and procedures during an anaphylactic reaction.  Teachers and staff take care of dozens, hundreds of kids each year.  They care about kids and want the school year to go safe and smooth for everyone.  They will appreciate the reminder that your child has some important, health needs and the review of emergency care procedures.

The recent tragic death of 13-year-old Natalie Giorgi prompted me to change a lot of ways in which I prepared our kids' school for possible allergic reactions.

1.  We revised our food allergy action plans.
Where once I had approved of Benadryl for reactions such as skin rashes, itchy nose and eyes, and sneezing, I have now changed the course of treatment to epinephrine for any symptoms beyond rash at the point of skin contact (nothing in or around the mouth) and any known bite or ingestion of an allergen even if a reaction does not develop.

My kids' classroom teachers now have but one course of action: an epinephrine injection.  This takes the responsibility away from teachers to make a judgment call on how severe an allergic reaction is.  Whatever the reaction, teachers should feel empowered to administer a dose of epinephrine, call 9-1-1, and then let medical professionals determine the nature of the reaction.  Receiving epinephrine when one doesn't really need it has minimal side effects: increased heart rate, jittery/restless behavior.  However, not receiving epinephrine when it is necessary can result in injury or death.  In fact, research points to the under-use or late administration of life-saving epinephrine as a prime factor in why individuals do not survive anaphylactic reactions.

Note: there is now an easier-to-read, picture-assisted food allergy & anaphylaxis emergency care plan.  If you have not created a plan with your child's doctor, definitely use the new form.

Ryken hardly notices the extra weight from wearing
his medication. I however notice the difference in
my lighter purse!
2.  My 8-year-old now self-carries his epinephrine injectors.  
In the past, I had been hesitant about having Ryken carry his own medication.  I feared he wasn't ready: that (1) he might lose them,  (2) he might somehow break them, or (3) the injectors might become toys and get accidentally administered in the hijinks among friends.

We have had open, honest conversations with Ryken about the dangers of food allergies since he was a toddler.  Granted, the exact words have changed over time -- at 2 we explained that milk and nut products would make him very, very sick and might have to get a shot and go to the hospital; at 8, we discuss with him the details about tragic deaths related to food allergies such as Natalie Giorgi, who died from accidentally biting into a dessert with peanuts.  I do not believe in shielding my kids from the idea that they could die from a small mistake.  Death is scary but it is a real possibility.  In contrast, I believe that the more my kids are aware and educated  -- much like spreading awareness in their school and friend communities -- the more empowered and vigilant they will be to make safe choices when they are not in my immediate care.

This upfront, continuous dialogue has helped Ryken understand and remember to label-read and hand-wash, avoid sharing foods and take precaution in situations where cross contamination might occur.  He is ready for the responsibility and very much wanting to carry it himself.   He does not fear having the medication on him anymore but, instead, sees the importance of having it as close to him as possible.  We have had good talks about his past symptoms.  I've had him reflect on past reactions and recall memories of when he *knew* -- when an alarm went off in his head -- that told him he was having an allergic reaction.

So we filled out the required paperwork with doctor and school nurse that authorizes Ryken to self-carry his Auvi-Q twin set.  Like a champ, he remembers to strap on his waist pack every morning of school.  He chose bright red because he wants it easy to identify for anyone who might need to assist him in case of an emergency.  To prevent from losing the pack, we designated one place (Ryken's backpack) where it will always be kept when Ryken isn't wearing it.  So far, Ryken has worn it even on the days when I have forgotten to remind him!


3.  We have switched to Auvi-Q as our epinephrine injectors.  
Earlier his year Auvi-Q entered the epinephrine auto-injector market that was previously dominated by the EpiPen.  My family had a chance to check out Sarah's set, practice with the trainer, and talk to Sarah's son Tristan who has had to have the Auvi-Q this summer and most recently and unfortunately at school for food-related allergic reactions.

The Auvi-Q's most unique feature are the audio commands that walk you through the process of administering the injection.  Seriously, it's a brilliant feature that will enable anyone who understands English to use it.

We also liked the Auvi-Q's compact size and simple design.  It is smaller than the EpiPen, doesn't appear as frightening to those fearing needles, and there's no mistaking where the needle will come out for the injection.  Because it isn't as long as the EpiPen, it was easier for my kids to grip with stability.  They quickly became experts at using the trainer.

Third, Tristan's positive experiences with the Auvi-Q convinced us this was a drug worth trying.  Tristan didn't feel any pain from receiving the shot -- he went so far as to insist that there was no shot, no needle.   He has had the Auvi-Q on 4 occasions and has not complained about the pain.  On his 4th time having the Auvi-Q, he administered the injection himself.  Sarah believes that Tristan was able to do this because his past Auvi-Q shots did not hurt, so he wasn't scared at all.

I have trained teachers and coaches on both the EpiPen and Auvi-Q and, I have to say, I see their relief in hearing the device instructing them and how easy it is to hold and press to activate the injection.  Overall, I think the ease of administering the Auvi-Q will keep my kids safer.

If you have not checked out Auvi-Q, talk to your allergist or pediatrician about it.  (Your allergist may have a trainer that you can check out!)  I recommend calling your insurance company to see if it is a covered medication.

4. We have sets of epinephrine in more places at school.
In the beginning of the year, I met with the school nurse who splits her time between three school sites within the district.  I appreciate her understanding of food allergies, her support of self-carrying and the Auvi-Q, but the thing is she is only at our school site two days a week.  California districts have really axed school nurse hours -- Sarah's kids do not have any school nurses on campus ever in her entire district!  It's really awful policy that California schools have had to deal with for many years now.

Anyway, without a main person with expertise on food allergies at the school site full-time, I decided to use Auvi-Q's $0 Co-Pay coupon to get sets of medication that follow the kids wherever they are at school.  So there are sets for each of my kids in the main office; sets in their classroom; one set that Ryken wears; and one set that the Kindergarten lunch/yard duty teacher always carries with her.  Having access to medication at all times makes me feel much better.   My kids will be exposed to the most food at recess and lunch.  And the yard/lunch staff have to watch so many kids that they might not be able to step away immediately to retrieve emergency medications from the office.

I am so grateful for the growing competition between EpiPen and Auvi-Q.  To bolster their fanbase, the makers of both EpiPen and Auvi-Q have special offers running until the end of 2013 that potentially reduce your co-pay for their injectors down to $0.  (This depends on your insurance.)  Regardless of which medication you prefer, do check out the coupons.  You might be able to arm your kids' classrooms, lunchrooms, and main offices with more epinephrine injectors at no or minimal cost to you.


What are some changes that you have made in getting ready for the new school year?

2 comments:

  1. Thank you for the tips! I've been looking for an allergist in Darien just to start me off but all of these things sound great!

    ReplyDelete
  2. Avery,

    Best of luck finding an allergist that's the right fit. We see two different allergists that are part of the same medical group. While their styles and recommendations do sometimes differ, I have to say that I like hearing two different perspectives.

    ReplyDelete