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. 

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?
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!