Going "Home" to Visit Eosinophilic Family!

The first time that a physician mentioned eosinophilic esophagitis (EoE) in relation to my little overachievers, I was devastated!  All that I knew of the condition came from observing a friend whose toddler son had it.  This sweet child had only 3 or 4 foods that he could eat, and my friend's stress level was sky high.  She focused nearly all of her energy on keeping her son nourished enough to avoid surgical implantation of a feeding tube.  I saw her battles with the insurance company, and how she scrimped to pay for the formula that cost roughly the same amount as her monthly mortgage payment.  I was not able to observe the effect on her husband because he was always working in an attempt to pay down the medical bills.  This little boy was growing up and meeting milestones that could never be revisited, and his parents were fighting so hard just to survive.  I wanted no part of that world!

My first response was to commune with my keyboard.  In February 2008, a keyword search for eosinophilic esophagitis led me to the American Partnership For Eosinophilic Disorders (APFED) and a relatively small list of research studies.  APFED's website summarized what I was not able to understand of the research.  I was relieved to learn that most kids with EoE are not like my friend's son!  Roughly 3/4 of EoE patients can remove the most common allergens from their diet to get rid of the excess eosinophils and find relief from symptoms.  Those foods are milk, soy, eggs,wheat, nuts (peanuts & tree nuts) and seafood (fish & shellfish).  That's a very tough diet to maintain!  But as long as they don't eat those foods, those EoE patients are healthy.  My little overachievers, of course, fall into the 1/4 of patients that require further food elimination or the use of steroids to manage their condition.  Based on the large number of foods that we knew to be problematic, we went straight to elemental diet which is the removal of all foods.

I expect you're getting a good laugh at my expense about now, but that's okay!  I have come to accept that this is just the way that things tend to work with my bunch.  To give my friend credit, she did not laugh when I complained about how HARD it was to live this life and how LITTLE information there was to guide us!  Instead, she put me in touch with a group of families whose children all had EoE or a similar condition caused by too many eosinophils in other parts of the GI tract.  It is the support of those other families and APFED's educational resources that helped me understand and adjust to what I know refer to as the eos world.

In 2009, I was able to attend APFED's annual patient education conference.  There I met countless other families.  For some, the diagnosis was new and overwhelming.  Others seemed like veterans in the daily fight against the evil eosinophil.  One such father took the podium the first evening.  His son was being successfully treated with elemental diet and a gastronomy tube.  He told us how difficult it was to hand his son a bowl of crushed ice to eat for a snack when the son had first stopped eating all food.  There were silent nods of understanding.  After gaining his composure, the father had gone to sit with his son.  When he rounded the corner, he found all of his children sitting together on the couch, each child with a bowl of ice in unspoken support for their brother.  In that moment, the emotional impact of EoE hit me.  I choked on a sob and bolted to the ladies' room where I could cry with a smaller audience.  And there was an audience, as I was quickly joined by a few moms who had come to offer their own quiet support.  After a splash of water and a few deep breaths, I rushed back my seat...just in time for the father to give reassurance that life with EoE does get easier.  And I knew then that my boys would be okay.  Even if they could never eat full diets and they always needed periodic surgical procedures, they would be okay.  And so would I.

 
Over the next day and a half, I sat through presentations where physician researchers addressed the audience of patients and parents as equals.  They took the time to explain medical terminology as they introduced it, but they otherwise addressed us as equals.  There were break out sessions where we were able to interact with the speakers in small groups to gain more detailed knowledge in areas of special interest.

Since that first conference, I have attended APFED's patient education conference each summer.  The information that I learn exceeds what I can find on the internet.  I meet the people that are changing the world for our growing community of eos families.  I reunite with friends that I see just once each year.  APFED's president, Wendy Book, once said that going to the annual patient conference is like going home.  And I agree!  As I prepare to spend this weekend in Philadelphia, I don't feel like I am preparing for a medical conference.  I feel like I am going home to my eosinophilic family!



While I am in Philadelphia this weekend, I will be participating in APFED's Hope on the Horizon Walk.  All funds raised through this walk will be directed to research on eosinophil associated diseases.  With time, research and continued collaboration between centers, it is my hope that there will one day be a less invasive way to diagnose, treat and monitor EoE.

Please consider sponsoring me for the Hope on the Horizon Walk.  You can view APFED's solicitation disclosure here.  There are 3 ways you can contribute.

1. Donate online through APFED's website with a credit card.
   Payment type = Hope Walk - Philly
   In Honor Of = Overachieving Bunch
2. Mail a check or money order directly to APFED.  Rather than risk an entry error, I ask that you visit APFED's donation page for further details.
3. Spread the word!

Three of my favorite overachievers walking for
APFED's Hope on the Horizon Research Fund.

Xolair: An Overachiever's Miracle Drug

It has been 10 years since Xolair hit the market.  Food allergies weren't even on my radar then, and I couldn't tell you much about asthma in general - let alone severe persistent asthma.  The only reason that I read the article about this new wonder drug is that I was stuck in a tiny room with nothing else to do.  I was annoyed with my doctor because he insisted on treating my shortness of breath and monitoring me for a while even though I had "only" come in with hives from a drug reaction.  Yeah...  I was clueless back then!

Whether it was a whisper from God or just because I'm a science nerd, I was compelled to read that article through to the end even though most of it was beyond my comprehension.  What I did understand is that this new injectable medication, administered once to twice a month, was going to change the allergy world.  One allergist was even quoted as saying that Xolair was going to put him out of a job!

When Overachiever #1 was a baby, we saw many signs of allergy.  His eczema was severe and resistant to standard therapies.  He always had some nasal congestion.  By 5 months, he had a constant wheeze that could be heard from several feet away.  As a "nervous" first time mom, I couldn't get anywhere with his doctor.  Then he stopped breathing during dinner when was he was just 7 months.  The ER doctor got us set up with an allergist.  Skin prick testing revealed multiple allergies.  We left with instructions to eliminate peanut and egg from his diet, and to find a new home for our beloved pets.  There were more medications than I ever would have thought safe for such a tiny child!  A home healthcare company came by the next day to deliver a nebulizer and teach me how to use it for the asthma that had also been diagnosed.
 
Life with an asthmatic baby was chaotic!  Nebulizer treatments were scheduled for twice daily to deliver the inhaled corticosteroids that were supposed to control his asthma.  Oral medications for asthma and allergies were scheduled for twice daily.  Emollients were applied throughout the day, and steroid creams were added in once or twice a day to keep the eczema halfway controlled.  We had to watch the clock to ensure that we were not giving too much albuterol.  We rarely went a day without adding in a dose or two of Benadryl.

Beyond medication, we learned that restricting activity would limit the wheezing.  Contact with furry animals must be restricted.  Airborne pollens and molds are problematic, so time outside has to be limited in spring, summer and fall.  Allergy shots were started at age 3 (or was it 4?) in order to give some relief from seasonal allergies.  Extreme heat and cold are additional asthma triggers.

We eventually became accustomed to this new way of overachieving.  Our sweet boy was just going to pick up whatever bug he encountered.   He would be sicker than the rest of us, and for way longer.  We settled into a pattern that included 5 days of oral steroids every 4 to 6 weeks just to keep him out of the hospital.  Phrases like "respiratory distress" and "intractible wheeze" were added to my vocabulary.

Doctors started suggesting Xolair when Overachiever #1 was 3 or 4.  They would tell me that this drug WOULD give him relief, but that there was no way that we could get insurance to pay for it because it has not been approved for use in children.  We couldn't afford to pay for it out of pocket, so Xolair was nothing more than a carrot just dangled there to taunt us!

When our allergist suggested a few months ago that we should try to get Xolair covered by insurance, I was doubtful that the approval would go through.  But we had letters of medical necessity from 3 board certified allergists, and approval was quickly granted for a 6 month trial.

It will be 2 months tomorrow since the first dose of Xolair was administered.  Two months ago, Overachiever #1 could only play outside for an hour before his asthma was flaring too severely to stay out.  He can now be out (even on high pollen days!) for 3 hours before he is miserable.  Previously, every sinus infection led to an asthma flare and a 5-day course of steroids.  We've weathered 2 sinus infections already.  His asthma did flare, but we were able to manage at home with albuterol.  I can't even giving the last dose of albuterol.  It's been at least 2 weeks since we've had to pull out the inhaler, and I even put away the nebulizer last week because we haven't used it in a month.  A month!!!

Perhaps the most exciting improvement that we've seen has nothing to do with the reason that we started Overachiever #1 on Xolair.  It is the lack of symptoms related to food allergies.  Almost exactly 2 years ago, ingesting a very small amount of apple cause flushing and facial swelling.  It has been almost a month since we started a trial of apple.  So far there has been no flushing and no swelling.  In fact, there has been no sign of any immediate allergic reaction!  There are some symptoms that could indicate an EoE flare, but it's too soon to say.

Xolair may not be putting allergists out of business as was once predicted, but it sure has been a miracle drug for my little overachiever!

How to Eat an Apple

Overachiever #1 has been trialing cooked apples for several weeks now.  He's been doing VERY well, with no signs of an IgE mediated reaction (no hives or breathing difficulties) and minimal symptoms that could be attributed to an eosinophilic response in the GI tract.  We had been reluctant to transition to raw apple because we were afraid to mess up a good thing.  (And by we, what I really mean is me!)  It is so very difficult to begin a new food trial knowing that, if the usual path is followed, we will have to take it away again in a couple of days, weeks or months.  While I would like to be optimistic, I am more of a realist by nature and the odds just really don't seem to be in his favor!

So what's a reluctant mother to do?  Ask the doctor, of course!  But not just any doctor.  I needed to hear from a physician with the knowledge and compassion for our experience who could gently point out that my fear is overblown.  As luck would have it, we were scheduled to see two such doctors!  I often refer to first as the Eternal Optimist.  I can walk into his office filled with anxiety and armed with a miles-long list of questions that I simply MUST have answered.  (Who doesn't need a plan A, B, C...Z?!)  When I leave his office, I am feeling totally calm and comfortable with "let's just see what happens" as the answer to most of my questions.  (How does he DO that?!  I want that calm in a bottle!)  This doctor, of course, told me there was no reason not to proceed with raw apple and that we have a good chance of it going well.  But that's not  a surprise to anyone, is it?

What I really wanted to hear was what the Realist would have to say!  He, too, feels that it is safe to proceed.  And even better, there was not a hint of the "this woman is crazy!" look that I get from most doctors when I indicate apprehension about proceeding with food challenges.  Perhaps I did an awesome job at hiding my fears...or perhaps this doc just "gets" it as no one else does.  Or maybe (just maybe!) I am simply over-analyzing again. It's been known to happen!

So I washed an apple and handed it to Overachiever #1.  Then I tried to keep myself busy in the kitchen so that he wouldn't have to endure me staring at him.  I think I made it about 10 seconds before I just had to look!  And right then, my heart broke.  In just a few months, it will be 5 years since we initiated a strict elemental diet.  During that time, a lot has been lost.  The muscles of the mouth and tongue weaken without the constant workout of chewing and manipulating various foods in the mouth.  (One can only create so many textures with sugar and ice!)  Even something as simple as knowing which teeth to use is tough when you've not had to do it since you were 3!  Realizing this brought tears to my eyes.

Putting on a smile, I noted how tough it is to break through the skin of an apple.  We talked about how some of our teeth are pointed while others are broad and almost flat.  We had spent many hours recently digging dinosaur bones out of plaster with various tools.  He remembered that the sharper tool had a different purpose than the one that looked like a hammer.  He hypothesized that our front teeth are intended for biting off pieces of food, and our back teeth are for chewing it into smaller pieces.  Then we tested that hypothesis.
   

Biting into this apple is hard work!

It was a real workout for those under-utilized jaw muscles, but those front teeth did the job.  And then the back teeth did theirs!

It worked!

And that, my friends, is how you eat an apple - one bite at a time.

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.

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!

Child copes with severe case of food allergies (WSMV)

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?   

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!)

Onto the Next Vote!

GREAT news!  Not really breaking news because I was on Spring Break with my Little Overachievers when it happened, but great news nonetheless!!


HB0866 was passed by the TN House Education Committee last week with a great deal of support.   The Senate version of the bill, SB1146, was also passed by the Education Committee.  I have not heard when the bills will be voted upon by the full House and Senate, but I will be sure to share the date when I have it!


Many thanks to those who spread the word about this bill, and those provided direct support through letters and phone calls to committee members!  I would like to give a special thanks to those who were able to represent our community at Legislative Plaza.  I so wish that I could have been there with you!

• Jill Connell, Memphis  
• Alyssa Tucker, Memphis
• Becky Basalone, Knoxville
• Jenine Ward, Murfreesboro
• Connor Ward, Murfreesboro
• Amanda Hargett, Murfreesboro

UPDATE: The bill that would allow TN schools to stock epinephrine autoinjectors for all students perceived to be in experiencing anaphylaxis was passed by the House and Senate of the TN General Assembly on 4/15/13.  Many thanks to all who lent their support to this process!!



LAST UPDATE:
There is a bill signing ceremony for this legislation on 6/4/13.  See this post for more info!  

TN Legislative Update

I received an update late this afternoon regarding the pending legislation that I have been talking about all week.  The original phrasing of Amendment 4828 to HB0866 would have required all schools in Tennessee to stock epinephrine auto-injectors that are basically prescribed to the school rather than a particular student.  The new phrasing authorizes schools to stock this life-saving medication which can be used on any student believed to be experiencing anaphylaxis.  This is still an important change from current law which restricts the use of epinephrine to those students who have a prescription and their own auto-injector on campus.  I have not received confirmation as to whether SB1146 (the TN Senate version of the bill) has received the same modification.  I hope that you will all continue to lend your support to this important legislation!


If you live in Tennessee and you have not already done so, please write letters of support this weekend.  These should be emailed directly to members of the TN House Education Committee and TN Senate Education Committee.  Please include the following details.

• Your first and last name
• Your city and state
• Briefly state why you support authorizing schools to stock epinephrine auto-injectors for use on any student experiencing anaphylaxis
• Ask committee members for their support
• Thank them for their time and service

Questions can be posted below in comments or directed to afanta@kvbpr.com.

UPDATE: The bill that would allow TN schools to stock epinephrine autoinjectors for all students perceived to be in experiencing anaphylaxis was passed by the House and Senate of the TN General Assembly on 4/15/13.  Many thanks to all who lent their support to this process!!


LAST UPDATE:
There is a bill signing ceremony for this legislation on 6/4/13.  See this post for more info!  

Letters to Support Auto-injectors in TN Schools

If you've read my blog within the last few days, then you probably know that there is pending legislation that would require authorize schools in Tennessee to stock epinephrine auto-injectors.  I feel like going into detail about the bill now would be silly because I'm already preaching to the choir.  If you don't know what I am talking about, take a look at my previous entry and you'll catch up quick!

My request tonight is for Tennessee residents to write a letter to the TN House and Senate Education Committee members to indicate their support for the bills that would require stocking of epinephrine auto-injections in all Tennessee schools.  Our legislators need to hear our stories if they are to understand the importance of this legislation!  Below are some suggestions to consider as you write.

1. Start now!  Letters need to be emailed to afanta@kvbpr.com by the end of business on Thursday, March 21.
2. Address one letter to the TN House Education Committee, and another to the TN Senate Education Committee.
3. Introduce yourself!  Include your full name and city/state.
4. Briefly state that you support legislation to require epinephrine auto-injectors in Tennessee schools.
5. Ask committee members for their support.
6. Thank them for their time!
    
7. Consider including a picture or two of your allergic family member.  I plan to include one picture of my 8 year old having fun at his birthday party, and another of him in the hospital receiving treatment for anaphylaxis.

Thank you so much for your support of this legislative process!!!  Please post any questions to the comments below.  I will answer them as quickly as I can get to them.


3/22/2013 Update
HB0866, Amendment 4828 was passed by the TN House Education Subcommittee on 03/19/2013.  The wording of the amendment has been changed from "requiring" schools to stock epinephrine auto-injectors that could be used on any student thought to be experiencing anaphylaxis to "authorizing" them to do so.

UPDATE: 
The bill that would allow TN schools to stock epinephrine autoinjectors for all students perceived to be in experiencing anaphylaxis was passed by the House and Senate of the TN General Assembly on 4/15/13.  Many thanks to all who lent their support to this process!!


LAST UPDATE:
There is a bill signing ceremony for this legislation on 6/4/13.  See this post for more info!  

HB0866 Passes TN House Education Subcommittee

Many thanks to all who shared yesterday's entry about pending legislation!  Passage of HB0866 would require authorize all schools in TN to stock epinephrine auto-injectors for use on students experiencing a life-threatening allergic reaction.  Epinephrine is a life-saving medication for patients experiencing anaphylaxis and must be utilized soon after symptoms begin to ensure maximum efficacy.  The TN House Education Subcommittee agreed after hearing testimony today that our schools need should be authorized to be prepared to address life-threatening allergic reactions when our children are in their care and agreed to pass this bill to the entire committee.

Below are the steps that Tennessee residents can take right now to help our TN House Education Committee members recognize the importance of this bill.

• Write a letter addressed to the House Education Committee - TN State Legislature.  Tell them why it is important to you that they pass this bill.  Please include your first and last name, as well as your address (city/state) so they will know you are a resident of Tennessee.  Letters that are emailed to afanta@kvbpr.com by the end of business on Thursday, March 21, 2013 will be assembled and presented together to Committee members.
    
• Consider having your allergic child write their own letter asking the Committee to pass the bill.
   
• Spread the word!  Share this information with your family and friends, your medical team and your social media contacts.
   
• Show your support for the bill by appearing in Legislative Plaza when the bill is presented Tuesday, March 26 at noon.  Please email Andrea at afanta@kvbpr.com if  you are able to attend.
   
• Watch for updates on this legislation.  I will continue to post information here as it comes to me from those working directly with the bill's sponsors.
• UPDATE, 3/20/13 AT 11:00 AM - A similarly worded bill is just starting through the TN Senate.  Please also send letters addressed to the TN Senate Education Committee to Andrea so she can compile those and present them all together for more impact.  I will post again when I have additional information on the Senate bill.

3/22/2013 Update

HB0866, Amendment 4828 was passed by the TN House Education Subcommittee on 03/19/2013.  The wording of the amendment has been changed from "requiring" schools to stock epinephrine auto-injectors that could be used on any student thought to be experiencing anaphylaxis to "authorizing" them to do so.

UPDATE: 

The bill that would allow TN schools to stock epinephrine autoinjectors for all students perceived to be in experiencing anaphylaxis was passed by the House and Senate of the TN General Assembly on 4/15/13.  Many thanks to all who lent their support to this process!!


LAST UPDATE:
There is a bill signing ceremony for this legislation on 6/4/13.  See this post for more info!