Tuesday, May 28, 2013

Bill Signing Ceremony - Epi in TN Schools

Governor Bill Haslam will be signing legislation soon to authorize TN schools to stock epinephrine autoinjectors for use on any student suspected of experiencing anaphylaxis.  Your phone calls, emails, letters and photos are what brought this legislation through!

Please consider joining Governor Haslam and other bill supporters for bill signing ceremony at 1:30 pm Central time on Tuesday, June 4, 2013 at the War Memorial building in downtown Nashville!  If you cannot attend, please consider sending a quick note to tell the Governor what this means to your family.

As I am totally bummed at being unable to attend myself, please direct all RSVPs, questions and letters to Andrea at afanta@kvbpr.com.  That way she can pull everything together and send out any last minute details that you'll need.

5/29/13 UPDATE:
Due to overwhelming response, no further guests can be accommodated in the space allotted for the bill signing ceremony.  Andrea is continuing to collect letters and thank you notes.  She will print these and present them to Governor Haslam at the ceremony.  Please email letters and questions to afanta@kvbpr.com.

Sunday, May 26, 2013

A Severe Case of Food Allergies

Check out my little man demonstrating how to use his EpiPen!

Yes, I realize that linking to this news story completely the negates the entire purpose of leaving names out of my blog.  But there is so much that I want to say that I couldn't NOT post it!  Perhaps I could have shared my thoughts anyway.  Maybe no one would have noticed the overlap of my first name with that of the woman in the story.  Or the age and similarity of that boy to my Overachiever #1.  But even if somehow no one ever made the connection, I would have known of the deception and that just wasn't going to sit right!  There are many words that can be used to describe me - including, I am certain, some that are less than flattering - but disingenuous is not one of them.  So I am temporarily breaking from tradition, with the hope that you will allow me to resume use of the usual moniker with my next entry.

Okay.  Now really.  Go watch the video!

When I first saw the news report, I was a bit disappointed.  I felt like Mr. Reitz's transitions between the different segments of video created more questions than they answered.  I thought that anyone with just a little bit of knowledge about food allergies would think me crazy and Paul overly restricted.  Then I realized something.  Okay.  So maybe someone (or a few someones) had to tell me how it was...  But they were right!

As a reporter, Mr. Reitz had 2 minutes to paint the overall picture of what we deal with as a family impacted by severe food allergies.  It is my job, as Paul's mother and a member of this overachieving family, to fill in the details that could not be addressed in that period of time.  Let's be real here!  I can't list all of Paul's food and environmental allergies, the other allergic conditions that are intertwined, their impact on our family and his treatment plan in 2 minutes.  (Give me an hour and I might come close!)  If I can't do it, then how can I expect someone else to magically arrive at and deliver such clarity?  Beyond that, no one to date has given me any flak for our approach to meeting Paul's needs based on this video.  (No, that was not an invitation to criticize, but if you must then please at least stop shy of personal attacks!)

What this 2-minute story has done is to give you a little peek into the reality of our overachieving family.  Now it is my responsibility to answer the additional questions that were and will be raised.

Question:  What is so unique about Paul that one should regard his case as severe?
Paul is allergic to every food that he has ever eaten.  Some foods have caused him to experience life-threatening anaphylactic reactions upon ingestion.  A few foods have caused him to have rashes and trouble breathing in the proteins that were thrown into the air from cooking or as we have walked past bulk bins of nuts.  Others cause only rashes with moderate to severe itching, and no other symptoms.  But in his 8 years, he has developed allergies to nearly every food that he has ever ingested.  The only "foods" that he has been able to tolerate are his medical formula, granulated white sugar, artificial colors and artificial flavors.

Question:  Why does an outing to the park require advanced planning?
Food protein is everywhere!  Shortly after we arrived at the park for our interview, I found half of a sandwich that had been discarded in the middle of the sidewalk.  I also retrieved and discarded a used straw and various food wrappers that were lying on the ground under the equipment.  Paul understands enough about his allergies now that he typically leaves those things alone.  However, just a few years ago he would have picked them up and potentially even tried to eat them.

There were several families having picnics that day, and some children were even carrying snacks around with them as they played.  (I cringed inside, but I did manage to refrain from following them around with wet wipes!)  Those without food allergies will eat a sandwich and simply brush away the crumbs.  Their hands look and feel clean, so they are comfortable foregoing a wash with soap and running water.  But food proteins are like germs.  They remain on hands and surfaces until they are cleaned away.  Every hand rail or other piece of equipment touched by a child who has not washed their hands since their last meal has the potential to unknowingly contaminate the surfaces of playground equipment.  Allergic individuals do not even need to eat while at the playground to accidentally ingest those invisible food proteins.  All that is necessary is for Paul to grab onto a hand rail that was recently touched by a child with an allergenic food protein on her hands, and then to rub his eyes.  That action alone is enough for the offending food protein to gain access to his bloodstream, potentially leading to a severe allergic reaction.

In addition, those with food allergies may not have the option to order safe food from a restaurant if they stay out longer than intended.  We cannot go anywhere without having Neocate that has been pre-mixed and kept chilled.

Question: Why must Paul be separated from his peers during lunch at school?
Paul sits at a nut free lunch table.  He is allowed to have a friend sit with him.  That friend must only avoid eating peanuts and tree nuts to be able to join him.  There is also close adult supervision due to his history of reactions to airborne food proteins, and also because he is sometimes overcome by the temptation to taste foods that he knows he is allergic to.  Why would he knowingly consume an allergen, you ask?  The answer is simple.  Because he is an 8-year-old boy who sometimes gets carried away by his impulses.  One of those impulses is to take just one bite so he can know what real food tastes like!

So!  What questions would you like to see answered?

Pssst!  I would really love to embed the video rather than linking to it, but I have no idea what I'm doing here.  See?  I really do just need someone to take all of my stories and put them up on the blog for me.  Who wants to help me figure this out?   

Tuesday, May 7, 2013

Movin' On Up!

Did you just sing the title?  I sure did!  It's been well over 20 years since I last watched George and Weezy Jefferson and their maid in that deluxe apartment in the sky.  What was the maid's name, anyway?  Funny that I don't remember, 'cause I still to quote her when the dishes are piled up and the windows are covered with fingerprints.  Really, any time that there is something around the house that I don't want to do!  Oh, well.  Her name is not the important thing here anyway...
When I sat down to write today, it wasn't to tell you about the time that I spent watching television when I was a kid.  It was to share my excitement over one of the little things that makes such a big difference in my adult life.  Okay, maybe it's not a BIG difference, but it is exciting!

[insert drum roll]

Overachiever #1 is moving up from the EpiPen Jr to the adult strength EpiPen!!!  We've been talking about it for quite some time, as his weight has been hovering right around that magical 55 pounds that is the general cut off for up-dosing.  (Up-dosing...  Is that even a word?)  Sometimes he is a pound or two over.  Sometimes he is a pound or two under.  But he is hovering.  So last week we decided to go ahead and make the switch.

You may wonder why this is is so exciting.  Carrying an EpiPen is carrying an EpiPen, right?  WRONG!  With three Epi carrying Overachievers, we have them all over the place.  They are in Overachiever #1's waist pack, the school nurse's office, my waist pack, my purse, The Big Overachiever's waist pack and, of course, on the kitchen counter at home.  While Overachiever #1 and The Big Overachiever just carry a standard twin-pack, I am compelled to carry one twin-pack of the yellow and one twin-pack of the green.  It doesn't matter that Overachiever #1 has forgotten his waist pack maybe 4 or 5 times in as many years.  As the mom, it is my responsibility to plan for that once a year mishap!  Yeah, I've been a bit neurotic about that.

The excitement of up-dosing is that I can now carry just 2 EpiPens with me, because all overachievers in this household are now on the same dose.  This means that I can carry a smaller purse!  Or I can even go back to alternative carriers like the one that I used to have that was a leg holster.  Or maybe I'll just keep carrying my big purse and dedicate that extra space to MY belongings since the rest is taken up by children's books and portable game players and all of the medical notes that I still have not turned into the school secretary.

The little boy that once took away my own breath and all feeling of security in the moment that he stopped breathing during dinner is growing up and turning into a responsible big boy!  The feeling of helplessness that once gripped me has loosened its hold so that I can shake off the fear of group anaphylaxis to a food containing both alligator and peanuts when I'm the only one to remember the EpiPens.  (But it's possible, right?!)  We can now participate in most activities while taking precautions to limit the risk of exposure to allergens unseen.  The transition from the green-capped EpiPen Jr. to the yellow-capped EpiPen is more than just a change in dosing.  It is a tangible sign that we are movin' on up from an allergy family to a family that lives with food allergies.

Well we're movin' on up!  (Sing with me!)