Wednesday, September 25, 2013

A Night Owl's Super Productive Morning



I didn't get formula made before bed last night, so I got up early this morning which is NOT an easy feat! I was on a roll and thinking to myself that I should try to get up early every day. (HA!)

44 ounces of unflavored Neocate. Check!
24 ounces of tropical Neocate. Check!
20 ounces of chocolate Neocate. Check!
88 ounces of formula divided into 10 cups. Check!
Lunch bags packed. Check!
Medication measured and laid out. Check!
There's the alarm that tells the boys to get their shoes on so they can take meds and get to the bus. Uh oh...
I FORGOT TO GET THE KIDS UP!!!

For what it's worth, my feet sprouted wings and the boys made their respective buses. I am fairly certain that neither washed faces, combed hair or brushed teeth... But they made it!!!

Sunday, August 25, 2013

My Food Allergies Do Not Define Me!

As the mother of two children allergic children, a husband with adult onset food allergies, and food allergies myself, sometimes I feel as though our family is the very definition of allergic.  We have to consider the impact of our allergies in every aspect of our lives, but that doesn't mean that is all there is to us - as individuals or as a family.  Very often, food allergies seem to be all that I talk simply because they are always on my mind.  I have to make a concerted effort to ensure that my Facebook page is not devoted solely to the topic.  There really is much more to me than just food allergies!  For my boys, it seems much easier.

School has been in session for 2 weeks already.  The boys have done the usual beginning of the year projects to introduce themselves to their friends.

No food allergies represented here!

My 8 year old came home with an assignment to select 5 things that his classmates could look at to learn about him.  He selected a dinosaur, a bug, Legos, a rock, and a car.  All items were pretty typical for his the age, though the rock was a bit mysterious to those that did not recognize it as a potential dinosaur fossil.  (Every rock is a potential dinosaur fossil!)  At the last possible second, he decided to leave the car at home so he could take a picture of his little brother instead.  How sweet was that?!




Favorites of an 8 year old boy with food allergies
Another day, we weren't even in the house before the 8 year old presented me with this list of favorites.  When I looked at the list of favorite foods, a wave of sadness hit me.  I don't know what I expected, but somehow it still hurts that we can't see the typical answers for an 8 year old.  I imagine that most boys that age would answer pizza, spaghetti and ice cream.  But he is only eating 3 foods right now, so he listed his favorite form of each.  Those are [Cape Cod] waffle chips, Brothers dehydrated Fuji apples, and raw carrots.

Of the three favorite things to do at home, riding his bike is pretty typical.  Thumper refers generally to any one of the wild rabbits that live in our back yard.  The boys routinely leave food out for them, hoping that the rabbits will come to trust them enough to allow them to get close.  (Yes, we have discussed the need to stay away from wild animals.  That lesson just does not stick!)  Worm patrol is the rescue of worms that are stranded on concrete after the rain has stopped.  He ever so gently returns them to the dirt, and if they've begun to dry up he will find a puddle for them so they can rehydrate.  I have learned not to expect to actually get anywhere when he's on Worm Patrol, because nothing is more important than a rescue!



This morning during a rare moment of snuggle time, I was talking to the 6 year old about school and friends and random stuff.  His favorite parts of the school day are also recess, snack and lunch.  Considering that he has just 4 safe foods, and that he sits with friends while they are eating foods that he has never tasted but wants to eat, it is pretty amazing that meals are among the times that he enjoys most.


My children are strong.  They are resilient.  My children are not defined by their food allergies.






Sunday, August 11, 2013

Anaphylaxis: Who Gets It?

When I was a kid, I yearned to reach that the mark that, in my family, would make me a "big kid."  That mark was my grandmother's height.  Short with bent shoulders, a face lined with the years, and white hair that looked like cotton candy.  Grandma was the yardstick that my cousins and I used.  Every time we went for a visit, a crowd would gather 'round as Grandma took off her heels to stand next to me for a measurement.  I don't recall how old I was when I finally hit the mark, but I do remember feeling an odd sense of pride, as though I had somehow willed myself to reach the her height.  And every time I saw her after that, she would remind me of a time when she had to look down to see me rather than up.

Every family has its measuring stick.  In my father's family, that was Grandma.

For a long time, my younger son seemed to think that having food allergies was typical.  While he has a ton of food allergies related to his EoE, he has never personally experienced anaphylaxis.  For a long time, I tried to convince him that he never wanted to!  But to the little brother that always had to be quiet at the allergist's office;  the one that didn't get to ride in the ambulance;  the one that didn't get to carry an EpiPen, not having life-threatening food allergies was almost like a punishment.  As the only member of our family not to have a need for epinephrine, he felt left out.  He used to ask me all the time when he was going to get to carry his own EpiPen, as though it was some kind of measuring stick.
He thought that carrying an EpiPen was a goal to achieve. 

So I was a little surprised at his recent response to a commercial for EpiPen.

 A soothing voice says, "Avoid allergens first.  Carry EpiPen always."  
We know. (Said without emotion, as though he was really saying blah blah.)
"EpiPen auto-injectors are for the emergency treatment of life-threatening allergic reactions, anaphylaxis, and for people who are at increased risk for these reactions."
We know...  (Mildly annoyed, as though wondering who wouldn't know this.)
"EpiPen is injected into the outer thigh..."   
We KNOW that already!

And in that moment, I was assured that he is well on his way to being a big kid.  He GETS it!  Epinephrine is used to treat anaphylaxis...a life-threatening allergic reaction that requires immediate medical intervention.  Epinephrine is not a license to eat allergens, and it's not a replacement for seeking medical assistance.  He's got it!
No.  He doesn't need to carry an EpiPen.  Epinephrine is not a measuring stick.  It is a life-saving medical device that is used to treat anaphylaxis to keep someone alive so they can receive intervention from medical professionals.

Now when are we - the adults charged with keeping so many little lives going...  When are we going to get it?

Wednesday, August 7, 2013

Peanuts: To Ban or Not To Ban? - Part 2

In Peanuts: To Ban or Not To Ban? - Part 1, I shared my philosophy for managing food allergies at school.  If you read that piece, then you  know that I do not generally support peanut free schools.  But what about specifically?

If my overachievers have taught me anything, it is that there is always an exception.  Always!  And when you are that medically documented exception, it can be incredibly frustrating.  It can take months or even years to convince doctors that your child really is that allergic.  Let's be realistic.  If you had told me 8 years ago that you could not cook anything in your house with peanuts, tree nuts, pork or eggs without causing your child to develop a rash and/or wheezing...  Well I would have probably called you crazy.  And then, after many months, we figured out that was why our baby was fine when he woke up and miserable before breakfast was even served!  With that in mind, now I am going to share what urged me to post my thoughts about peanut bans at school.

There was a recent post on a Facebook page where readers were asked to weigh in on peanut bans at school.  The responses were mixed and downright heated!  My perception - or maybe it is more of a hope - is that those who are so vehemently opposed have limited knowledge about food allergies.  Or perhaps they have a good knowledge of their own food allergies, but they do not recognize that sometimes there are individual situations that are more challenging than their own.  Below is my main response to the discussion - the information that I felt was important enough to share that I needed to bring it over here to my own space.  To be fair, the statement below is as much about allergen free classrooms and the requirement for party food to be allergen free as much as it is about peanut-free schools in general.

1 in 13 school aged children has a food allergy. That works out to 2 students per TN classroom. That is 2 students per class whose lives are potentially endangered by the presence of peanut protein. 

Food proteins are like germs. They are invisibl
e to the naked eye and easily spread from surface to surface by hands, feet, books, bags and just about anything else. Unlike germs, food proteins are not destroyed or removed by hand sanitizer. The only way to remove food proteins is to wash with soap and water. And by wash your hands, I mean lather for at least 20 seconds per the CDC recommendation. Very few people actually observe that full 20 seconds of lathering!

It's not just about what allergic individuals eat. For some patients, ingesting even a minute amount of their allergen can be deadly. Ingestion can mean that the food enters the bloodstream through the mucous membranes of the mouth, nose or eyes. It can also mean entry directly to the bloodstream if the student has a break in their skin. Even a paper cut can introduce allergens to the bloodstream if there is an allergen is introduced into the cut.

The next time you see a group of kids, watch closely. How many have food smeared on their faces or their clothes? What surfaces do they come into contact with? (Door handle, desks, pencil sharpener, white board markers, pencils, walls, etc.) Who touches those surfaces next, and then what surfaces do they touch? How many of those kids do you see wiping (or picking) noses or rubbing their eyes? Don't forget to make note of the thumb suckers and nail biters! Every one of these situations creates risk for students with life threatening food allergies - especially if they are reactive to trace proteins.

Now consider this. If a student in your child's class develops anaphylaxis due to the accidental ingestion of peanut protein, your child is there to see it. Your child will see another child struggle to breathe, the administration of an epinephrine injection, potentially CPR and mouth-to-mouth resuscitation. Your child's classroom will be invaded by adults entering to assist. They will watch their classmate being loaded onto a gurney and wheeled off to be loaded into an ambulance. They will wonder whether their classmate is going to die. And it is very possible that, despite emergency measures taken, that child could die anyway.

Do you really want to explain to your child that their friend experienced a life-threatening, and potentially life-ending, allergic reaction because you didn't think it was necessary to send something other than peanut butter to school for your child to eat?
Again, I do not support blanket bans.  I feel quite strongly that peanut free schools are not necessary for the vast majority of kids with peanut allergies.  Generally speaking, I feel that this is an accommodation that is more about making adults feel better than actually keeping students safe.  But I do support limited bans that are put in place based on physician-documented medical need for avoidance of an allergen.

What it comes down to is this.  If a physician determines a medical need and the school agrees to make an accommodation for that need, it is not my place as the parent of a different child to second-guess the team that made the decision based on medical data.  It is my duty as a member of the school community to support our educators as they are charged with meeting the educational and medical needs of each student in their care.

Peanuts: To Ban or Not To Ban? - Part 1

One of the hottest debates about food allergies is whether or not peanuts should be banned from schools.  Some parents of allergic kids are insistent than schools should not serve or allow peanuts in any form.  Period.  Other parents of allergic kids feel that is overkill.  Parents of non-allergic kids also have varying opinions.  The most vocal seem to feel that a ban on peanuts somehow violates their child's civil liberties.  (I'm still waiting for someone to show me where the right to eat peanuts is listed in the Constitution or any other body of laws!)  

My own opinion is that peanut bans are generally not necessary, and that they tend to create a false sense of security.  (Is there someone checking labels on every bit of food that enters the school to enforce the policy?)  I also tend to get annoyed because my overachievers have life threatening allergies to foods that could never be banned.  Today's example...chicken.  Can you even imagine the uproar that would occur with a ban on chicken fingers?!?!?!  Of course, chicken is really not an apples to apples comparison.  Peanut allergy is more common than chicken allergy, and it also causes anaphylaxis at a greater rate.  But still.  Life would be way easier if we didn't have to look for chicken protein eeeeeverywhere!  (Seriously.  Outside of desserts, chicken broth is ubiquitous.)

My preferred approach is to give allergic students the accommodations that are medically needed, while resisting the temptation to put accommodations in place that are more about making the adults feel comfortable than providing actual safety.  In my ideal world, accommodations will vary based on severity of the allergy plus the student's age, stage of develop, and maturity level.

The youngest students and others who lack the cognitive ability to understand or fully avoid their allergens will need more accommodations than others.  Also in this group would be those that are very reactive to trace proteins, those who are allergic to many foods, and those who are prone to intentionally eating allergens.  These students may require classrooms that are food free, or at least free of specific foods.  It may be necessary to implement some degree of hand washing to ensure that food allergens are not inadvertently introduced to the classroom via cross-contamination.  Depending on the specific allergy, it may be necessary to limit what supplies are used for lessons and art projects.  Think of it like this.  If you can set up a "safe home base" for the allergic student, then you've got an area where the student and the teacher can relax a bit about food allergies and focus instead on learning.  Additional accommodations will likely be needed for whenever these students leave the classroom and are therefore at more risk from their allergens, but for the bulk of the school day the concern for food allergy reactions is pretty low.
My 8 year old falls into the category above for several reasons.  In addition to an allergen free classroom, he requires specialized seating arrangements for lunch and considerations at other times when he is outside of his own classroom.
With time and experience, students can begin to take over little pieces of responsibility from the adults around them.  Those who can be trusted to eat only safe foods may be able to transition to more independence.  (Ex: Move from peanut free table to the main lunch table with an end seat where adults can monitor them for the development of an allergic reaction.)  Once kids can remember to keep their hands away from mucous membranes, they may be able to have limited skin contact with their allergens.  (Translation: They do not to suck thumbs, bite fingernails, pick noses, rub their eyes, create open wounds by picking scabs, etc.)  It may be possible to accommodate these students by substituting safe foods for allergens that are used in classroom activities.  (Ex: counting with Smarties rather than M&Ms)  These students may be able to sit wherever they want for lunch, with friends prepared to signal for a lunch monitor if an allergic reaction begins.
My 6 year old is now able to sit with his peers for lunch.  He doesn't read labels, but he knows to look for the safe symbol that I add to foods that are free of his allergens.  He continues to bite his nails and pick his nose like most boys his age, so he continues to require an allergen free classroom.  He is more independent than big brother partially because none of his allergies are anaphylactic in nature.
As students move from early elementary school and then to junior high and high school, their Allergy Action Plans can and should be adjusted to prepare them for the eventual reality of living on their own with food allergies.  But just as we transition our children from making their bed to cleaning their room to larger household chores, we need to help our kids transition from an adult-led control of food allergies to the self-management that is necessary for teens with food allergies to experience a full life while also attending to their medical needs.
Continued in Part 2

Sunday, August 4, 2013

Why Schools Need Stock Epinephrine

You probably know by now that I support the availability of epinephrine auto-injectors in all Tennessee schools for use during unanticipated anaphylactic emergencies.  I write an Op Ed recently on the subject.  It was published The Tennessean on July 31.  Below is a link to the piece.

http://www.tennessean.com/article/20130731/OPINION03/307310093/Tennessee-Voices-New-law-cuts-risks-students-serious-allergic-reactions 

Friday, August 2, 2013

Back to School with Allergies is HARD!

Last week if you'd talked to me, here's what you would have heard:
It's the end of the summer and - for the love of my kids - school has got to start soon!!!
Don't get me wrong!  I love my kids, and I am thankful that I am able to stay  home with them. (Really!) We've had a ton of fun this summer playing outside, catching bugs and generally just being silly together.  But we are all seriously ready for some time apart!  Like several hours every single day for a while.  Plus the Little Overachievers need the schedule that we're forced into during the school year - the one that conflicts with my Delayed Sleep Phase Disorder (Remember my surprise Night Out back in December?) and therefore does not exist during the summer months.

Right up through last weekend, I was ready to go through the motions to extend last year's accommodations and tweak them for a new grade level.  I figured that I would meet with the allergist and pediatrician to get new prescriptions for EpiPens and rescue inhalers, as well as a new Allergy Action Plan and other paperwork that must be signed by someone with thee all important M and D behind their name.  I would drop that stuff off at school, do back to school shopping, meet with New Teachers, and then celebrate my first kid free morning since school let out for the summer.  All a matter of rubber stamping, right?
WRONG!!!
To be fair, the hard part really is done.  When I first inquired about starting Overachiever #1 in a public preschool back in 2008, I was fairly convinced that his allergies were too extreme to even consider putting him in school.  But I knew that I could not allow my fear to prevent him from experiencing a normal childhood, so I had to try.

When I first met with the school, I was determined to give everyone the benefit of the doubt.  But I was also prepared for a battle, should one come to me.  In reality, everyone at the table wanted what was best for my son - including the district official that initially feared aloud that homeschooling could be the only safe option for a child with so many food allergies.  We talked through every moment of the school day, from first to last bell.  We worked out details of transportation, where the EpiPen would be kept, who would be trained to administer, how allergens would be kept out of the classroom, how Teacher would identify allergens, and on and on and on.  For 5.5 hours, we worked on a plan that would allow my "allergic to the world" child to attend school with his peers.
Setting aside my fears and letting my allergic child go to school for the very first time...  THAT was the truly hard part!

The hard part really is past!  Now it's just a matter of making updates each year to ensure that the accommodations we have in place are still medically necessary.  Allergic students need to take on a little bit more responsibility for managing their allergens as they grow up, and they can only do that if we refrain from putting or keeping accommodations in place that are more about our comfort than true medical need.
So how do we know what is a true need?
First and foremost, we can take ourselves out of autopilot.  Accommodations that were in place last year may still be needed.  Or maybe - just maybe - we can drop or tweak them a bit.  My son's doctors are in the best position to help me figure out where medical need ends and personal comfort begins.

This year I decided to try something new.  For the last few years, I have driven 3 hours each way to have school paperwork filled out by the allergist that helped me with the transition to preschool, and then to kindergarten.  Of all the doctors on my son's current medical team, he is the only one that has truly seen just how allergic my boys are.  But we have a new allergist, and he seems to be a really good fit for us.  In 9 months, he has earned a great deal of my trust.  I decided to test him (and me!) by asking him to help us with school paperwork.

So Monday morning, I spent the morning with this new and mostly trusted allergist.  We talked about how the ultimate goal is to remove pretty much all of the restrictions over time because, by the time a typical child hits junior high, he should be able to manage his food allergies with very little required from the school beyond Epi training.  (There will always be exceptions!)  But we aren't there yet.  The allergist went over last year's accommodations with me, line by line.  I told him what areas I thought we could change and why.  He gave some suggestions for tweaks that I'd not considered.  We came to a consensus on the accommodations we both want the school to agree to, and then we started working on a new Allergy Action Plan.  (Translation: He started working on a new AAP while I dissected his patient education, requiring him to explain everything that differed in the least from what I'd been told by other doctors.)

After allergy and Xolair shots, we dashed home so that I could update my electronic files.  Then I printed off my new document and we headed to the pediatrician.  There we repeated our morning.  We went through last year's plan.  I reviewed changes that the allergist and I wanted the school to make.  The pediatrician agreed.  We are all on the same page.

Now I wait for both doctors to write letters to the school addressing a list of specific concerns that need to be addressed for the school file.  When they are done, they will call me so I can pick up the letters and hand deliver them to the school.  In the meantime, I have emailed the school with the changes that the doctors and I would like to see made to this year's accommodations.  I have also requested permission to meet with Teacher prior to the first day of school.  Now I wait for their response on both points, and the process will potentially begin anew.
So much for rubber stamping the paperwork!
What I tend to remember during the summer is that last week of school in the spring when we all have everything down pat, including the uncanny ability to call or show up just when we are needed.  What I remember in the weeks before school starts every fall is that getting accommodations in place before school starts is hard work!  

I am looking forward to school more than ever.  Only now, school needs to start so I can hurry and get to the "we've got this" phase where everything comes just a little bit easier!

Wednesday, July 31, 2013

Smurfing Food Allergies?

While I have written guest blog pieces for other blogs, I have not previously considered posting someone else's words here.  This blog is, after all, about my Overachieving Bunch!  But every so often, someone will explain my thoughts and feelings even better than I can for myself.  

Today's post is written by one of the friends that I referenced in my recent post about walking the line between reasonable accommodations that allow allergic kids to live and those that are more about making adults feel better than anything else.  Sandra is the mother of two children, including a 9 year old with an anaphylactic allergy to peanuts.  She is often the example that I look to when I need a balanced perspective so (naturally!) I had to talk to her when I started seeing calls to boycott The Smurfs 2.  Here's what she has to say on the subject.

Sandra and her daughter,
living without fear of peanut allergy
Living with two tweens, I sort of expected The Smurfs 2 to make a commotion. The first is one of our favorites, so the second was on our must see list. I did not know that the film would be making a splash in the allergy community. In retrospect, I’m glad I did not know because it allowed me to view the film without bias. 
First let’s understand what has caused the ruckus. There is a scene early in the film where the main characters, Patrick and Grace (portrayed by Neil Patrick Harris and Jayma Mays), are throwing a birthday party for their 4 year old son, Blue. It’s established that there are some specific dietary needs, and that Patrick and Grace are doing all they can to address them properly. Enter Patrick’s step-father, Victor. Patrick seems to perceive Victor as a sort of bumbling embarrassment who always messes things up. Enter food allergies. Victor begins to hand out corn dogs to the party guests. One set of parents asks if the corn dog has peanuts. Victor responds that it doesn’t. Once the boy begins to bite into the dog, Victor continues that it’d be silly to include peanuts in the recipe since the whole thing is fried in peanut oil. 
I waited. What now? Is this the joke? My daughter nestled down into my arm and whispered “Is he going to have a reaction?” On screen the adults fly into action. Grace grabs the phone. I took it to be that she was calling 911. In the following scene, Patrick is on the phone with the boy’s parents. He clearly addresses two key points – the boy had a reaction that included hives and swelling in his throat. The boy is now fine, having been treated in a timely and proper manner. It’s Victor again who doesn’t quite get it. He says something to the effect of “at least it wasn’t life threatening.” Patrick’s response, while not verbal, conveys the message that the reaction was life threatening and Victor is again clueless. 
Some are calling the film out for "making light" of allergies. Not all of them have seen the film.  Having helped my daughter manage her food allergies for 7 years, I have seen many cringe worthy allergy references in entertainment vehicles. This was not one of those. This was a scene that showed one adult who clearly did not understand the severity of food allergies and it showed other adults who did, in fact, “get it.” Not only that, it showed a realistic response, albeit medication and trip to the ER was not included in the content itself. The call was being placed for medical care, however, and the severe reaction was referenced. 
This raises several points I think we all can learn from.

  1. Including reference to allergies in media can be used as a vehicle to raise awareness. There were audible gasps in the theater today when the words “peanut oil” were uttered. People got it. Not all of them, but enough of them to make the point to the rest. Perhaps the next time one of them is asked “Is there peanuts in this?” the people who saw this will remember to think beyond the actual nut. Maybe when someone says “Is there milk in this” There’s a second thought of “Does cheese count?”  
  2. Including reference to allergies in media can open dialogue. As my daughter nestled into my arm and wondered about the young boy, I took advantage of the teaching moment.  “They responded as they should. If it's fried, ask about the oil -lesson learned. Right?” I said to her. And she nodded. Hours later, that scene is far from her mind. She’s off rattling about all the things that made her laugh.
  3. Kids like to see themselves in their toys, books, films and tv shows. When Cloudy with a Chance of Meatballs came out, my daughter loved Sam Sparks for one simple reason. “She’s me!” Yes. Exactly. Red hair? Check. Smart chick? Check. Glasses? Check. Food allergies? Check. When American Girl introduced an allergy lunch kit last year, my daughter was ecstatic. Her look-almost-alike doll already had a pair of glasses. Now she could have her own auto-injector. Of course, she also adores the newest American Girl, Girl of the Year because Saige has blue eyes, red hair, likes to ride horses, gets stage fright and is a budding artist. Check. Check. Check. And check.

    Having food allergic characters in films is not a bad thing as long as it’s handled in a respectful manner. It shows us all that normal, everyday kids have food allergies. They also go to birthday parties and become weather reporters with an adventurous streak.

    With Sandra's experience and opinion, and knowing that she is my allergy mom alter ego, I am very glad that I chose to withhold judgment.  And I think that I will be taking the boys to see The Smurfs 2, because I like to support those that make the effort to realistically show what life is like for families with foods allergies. 

    Friday, July 26, 2013

    Stock Epinephrine for Tennessee Schools (VIDEO)

    8-year-old demonstrates how to use an EpiPen in the video below

    New law allows schools to keep EpiPens in cases of emergency: The law authorizes all Tennessee schools to voluntarily stock epinephrine auto-injectors, better known as EpiPens.


    Wednesday, July 24, 2013

    Reasonable Concern vs. Anxious Allergy Mom

    When Overachiever #1 was younger, it was difficult for me to imagine him ever living a normal life.  How could my "allergic to the world" child ever survive in a world that revolved around food?!  I like to say that I was a bit anxious.  Those who were forced to deal with me at the time would probably choose a more colorful description.

    With the help of FAAN (now FARE) and some seasoned allergy moms, I was quickly schooled in label reading, cross-contamination, the need to plan ahead for everything, to always carry an Epipen, and to actually open my eyes to my surroundings so that I could spot danger before my little man found it for himself.  I learned that reasonable precautions or accommodations can be determined based on medical data.  (When my baby ingests or has X rubbed on his skin, a watchful physician can note objective findings such as a rash, wheeze, immediate vomiting, etc.  Therefore, we insist that people wash their hands before holding baby and ask them to refrain from kissing him.)  Those are very different from the precautions that I may be tempted to demand based on my fear of what "might" happen.  (I've never actually seen it happen, but what if someone eats X and then breathes on my son and he has trouble breathing?!  My son cannot - under any circumstance - be around X!!!)

    To help me figure out "reasonable" vs. "anxious" concerns, I imagine a line that divides the two.  That line is, of course, rather gray.  And its location is different for those foods that have caused breathing difficulties or multiple system allergic reactions than for those foods that cause only a mild rash with ingestion.  The line has moved over time.  A crawling baby is going to find more allergens than a baby content to sit in a swing.  A typical 5 year old is going to be able to take some responsibility for avoiding their allergens if they are given guidance and oversight by an adult.  An 8 year old can take on more responsibility.  I imagine the line will shift significantly in another few years, and I will continue to prepare for that.  But I am not going to worry too much about the future just yet.

    As we head into a new school year, I find myself once again looking for that line between reasonable and anxious.  What accommodations are medically necessary?  Which ones can we relax a bit based on age, increased responsibility and some improvement to allergic response?  Those answers are not easy to come by, so we are scheduled to sit down with some trusted physicians.  Then we will meet with the school.  Despite feeling a bit anxious, I am confident that together - as a team - we can determine the vigilance necessary to keep Overachiever #1 safe in this world filled with allergens without establishing restrictions that are all about making the adults feel safe.

    Tuesday, June 25, 2013

    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.



    Sunday, June 16, 2013

    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!

    Monday, June 10, 2013

    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.

    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!)

    Sunday, March 31, 2013

    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!  

    Friday, March 22, 2013

    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!  

    Wednesday, March 20, 2013

    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!  

    Tuesday, March 19, 2013

    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!  

    Monday, March 18, 2013

    Pending Legislation for Epinephrine Auto-Injectors in TN Schools

    The TN House Education Subcommittee will be meeting tomorrow at 3 pm.  On the agenda is HB0866 which would require authorize all public and private schools to stock epinephrine auto-injectors to treat students in the event that their own auto-injector is unavailable or they are having an anaphylactic reaction for the first time while at school.  The bill stipulates that every school shall stock auto-injectors in at least 2 secured but unlocked locations such as the school office and cafeteria.

    The bill is written in such a way that a school nurse or other trained personnel may utilize the auto-injectors for anaphylaxis under a standing protocol from a physician.  The prescribing doctor would be exempted from liability "unless the physician issued the prescription or standing protocol with intentional disregard for safety."  The school nurse or school employee administering the epinephrine would also be exempted from liability with the same phrasing.    

    Assuming that HB0866 is passed by the Subcommittee, it will be presented to the full House Education Committee at noon on Tuesday, March 26.


    You may wonder why this bill is important.  The following are statistics pulled from FARE's website.

    • Researchers estimate that up to 15 million Americans have food allergies, including 1 in 13 children.  That works out to roughly 2 children per classroom.
    • Failure to administer epinephrine promptly after an allergic reaction begins is a significant risk factor for fatal anaphylaxis.
    • Teens are among the group of patients with the highest rates of fatality due to food-induced anaphylaxis.
    • Food allergies can begin at any time, even to foods that have previously been consumed with no ill effects.
    • 20 - 25% of anaphylactic reactions in a school setting occur when there was no previously known food allergy

    Now for the most pressing question.  What can we do to help our House Committee members understand the importance of this bill?
    • Show your support for the bill by appearing in Legislative Plaza when the bill is presented Tuesday, March 19 at 3 pm and/or on Tuesday, March 26 at noon.  (You do not have to speak!)  Please email Andrea at afanta@kvbpr.com if you are able to attend in order to work out the logistics.
    • Write a letter addressed to the House Education Committee - TN State Legislature stating why you support the bill.  Please include your name (first/last) and address (city/state, at minimum) so the committee members will know that they are hearing from TN residents.  Letters can be emailed to afanta@kvbpr.com no later than Thursday, March 21, 2013.
    • Consider having your allergic children write their own letter to the Committee saying what the bill would mean to them.
    • Spread the word!  Share this information with your friends, family, physicians and blog readers.

    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!  

    Friday, February 15, 2013

    Not "Just" a Cookie

    When I think back to the Valentine's Days of my childhood, there are three things that I remember quite vividly.  First is the careful planning and crafting of the shoe box that would collect my valentines.  For some reason, my creations always included purple hearts and ric rac ribbon.  I am quite certain that my art teacher had other supplies available.  But those two features are absolutely required to make a winning Valentine's box!  Next is the heart-shaped box of chocolate candies.  I never did figure out the code that was supposed to tell you what filling to expect, so I had to punch in the bottoms of each one to figure out what was inside.  Just thinking about those chocolates has my mouth watering!  And then there are the cookies...  There were always homemade cookies with a ton of frosting and shaky little conversation heart phrases.

    Times have changed.  Or perhaps the Little Overachievers' school just has different priorities.  Either way, transforming shoe boxes into collection boxes for valentines is not in the lesson plan.  Instead, it's a paper bag decorated with stickers.  Somehow, it's just not quite the same.  Multiple food allergies (for all of us!) make the box of chocolates a no go.  But the cookies...  The cookies, I can do!

    Overachiever #1 is limited to his medical formula, granulated white sugar, artificial color and artificial flavors. A few years ago, I would have told you there is nothing remotely cookie-like to be created with those ingredients.  Today, however, I know better.  Always the procrastinator, writing out valentines was saved for last night.  So this morning I dropped the Little Overachievers at school and then set out to create memorable "just sugar" cookies in time for the afternoon parties.

    Four pounds of granulated sugar, a surprisingly small amount of water, and lots of stirring yields a mixture that feels about like wet sand.


    A packed handful of the mixture can be rolled out like cookie dough.


    Cookie cutters work just as well for packed sugar as they do for cookie dough.  Sugar doesn't hold together quite the same, so a spatula is required to transfer each cut out.  (Don't ask me how long it took me to figure that out!)  You can also use candy molds or silicone ice cube trays to make "just sugar" candies.


    A couple of hours in the dehydrator is enough "cooking" to transform the wet sugar into a solid cookie or bite-sized candy.  Store bought powdered sugar is a no-go in our house due to the inclusion of corn starch to prevent clumping.  So I use a coffee grinder to pulverize granulated sugar.  The resulting powder can be mixed with artificial color and a few drops of water to create a glaze that is easily spread with a small rubber spatula.  Once the glaze has dried, an artificially colored decorating pen can be used for writing messages.  


    The end result is not just a cookie.  It is a smile that preempts tears.  It is a single "Yes, please!" in a world of "No thank you - I'm allergics."  Most importantly, it is the start of a new family tradition and, I hope, a memory that the Little Overachievers will recall with fondness when they are adults thinking back on what "makes" Valentine's Day for them.

    Saturday, January 26, 2013

    ARRRRRR, Matey!

    When we started talking about birthday plans a few weeks ago, the Little Overachievers were united on just one thing.  They wanted to be pirates.  And once they had made up their minds, they were determined to have a pirate party at one particular place with all of their friends.  And I do mean ALL of their friends!  Or at least all of their classmates.  So I booked a location (no WAY could that many kids would fit into our tiny house!) with lots of space and a cool pirate ship to play on.  Then I started shopping.  I got a Jolly Roger flag, pirate hats, eye patches, plastic swords and all sorts of treasure for the kids to go find.  (Have I ever mentioned that I love online shopping?  No way could we have pulled this off with real world pricing!)

    I had great plans!  No.  Scratch that.  I had the grandest of plans!!  We were going to set up a treasure hunt.  I even made a bunch of treasure chests!  I was going to give each kid a list of treasure to collect and then that would be their goody bag to take home.  There would be a staged area for photos with an adult taking pictures of every kid in their pirate gear.  We would have games and lots and lots of fun! Have I mentioned that we were going to do all of this in a time slot of less than 2 hours?  Okay.  Fine.  So my plans were perhaps a little ambitious considering the 5 minutes of time that I was allowed to set up before guests were to arrive.  Plus we were 3 minutes LATE to the party, so we had guests arriving before us!
    I reluctantly lined up my treasure chests which suddenly seemed too obviously homemade - and not in a good way - to call treasure chests.  (I am actually rather proud of myself now that I've adjusted to the idea of them being used as party props for a bunch of little kids rather than ready for a movie set as I had envisioned!)  Then I tried to do an assembly line for guests to get their pirate gear and treasure.  That was a very big reminder of why I could never be a teacher.  (How do they handle having so many kids RIGHT on TOP of THEM?!)  I had to resort to sending them all to play and calling them back to me a few at a time.  They were allowed to select a sword while I labeled a hat and goody bag.  Then they each filled their own goody bags from the kid-friendly treasure boxes.  A couple of parents jumped in to help draw on beards, mustaches and tattoos with an eyebrow pencil.  Eventually we got everyone dressed up.  They were having so much fun already that it seemed silly to interrupt them with the games that I had planned.  Their ideas were way better than mine anyway!

    You are probably asking yourself why I would put myself through this when I had rented out a play place where they typically run parties while parents sit back and chat with other adults.  Guilt.  Plain and simple guilt.  I have been to a whole lot of birthday parties in my life.  There is one thing they all have: cake and ice cream.  If not cake, then another favorite dessert.  But the Little Overachievers don't eat like other kids...  Knowing that we can't give them something as simple as a beautifully decorated, professional quality cake makes me feel sad.  And feeling sad for my kids not being able to eat like their friends makes me feel guilty because they share their allergic tendencies with me.  So how does a mom allay this overwhelming feeling?  She compensates by throwing the best darned birthday party she can so no one will even notice the lack of cake!

    I am not creative by nature, so I thought about all of the birthday parties that I attended as a kid and which ones were the most exciting.  I should be able to duplicate one of those, right?!  But I kept coming back to a party that I did not get to attend.  It was in January of first grade, the Saturday after I had missed an entire week of school due to the chicken pox.  My fever didn't break until Thursday night, so I wasn't allowed to go to school on Friday.  According to my doctor and the school, I would have been allowed to return on Saturday if it had been a school day.  But it wasn't.  It was party day instead.  I was sooooo excited to be well just in time for the big party!  But my mom kept me home because she said if I stayed home sick on a Friday that I shouldn't be attending social events over the weekend because that would look bad.  (Yeah, like anyone was going to think that my scabbed over face was from anything but the chicken pox?!)  When I got to school that Monday, the only thing that anyone talked about was this birthday party.  This was in the early 80s when every business that was worth my quarter had a PAC-MAN machine to play.  The birthday girl's mom had rented out the local community center and put together costumes for all of the guests.  Using the lines for the basketball courts, she reconstructed a PAC-MAN maze.  Guests in ghost costumes chased each other around and even had the little "out" box where the PAC-MAN characters who had been caught had to sit to rejuvenate.  It has been three decades and I am still bummed that I didn't get to go to that party!

    So that's why my kids have to have the best birthday parties ever.  Because when their friends leave, I don't want them talking about how awful it was that there was not even any cake or ice cream.  I want them thinking it was THE best party EVER, and not even realizing that we didn't serve them anything more than juice and a lollipop made with Overachiever-safe ingredients.  
    For what it's worth, I think we may have achieved that.

    Our guests greeted their parents with mustaches and tattoos and smiles.  Even the girls!  They immediately started telling tales of sword fights and walking the plank.  I hope that when they see all of their friends on Monday that they are still smiling, even if their parents do refuse to draw on new mustaches.