Sunday, February 26, 2012

What's wrong with him, anyway?

Here's the zillion dollar question.  What's wrong with him?  

The short version:
Aidan has an eosinophilic gastrointestinal disorder (EGID) that involves his esophagus (Eosinophilic Esophagitis - abbreviated EE or EoE) and his colon (Eosinophilic Colitis - EC).  He also has environmental allergies, potentially life-threatening food allergies and Gastroesophageal reflux disease (GERD).  He also has Reactive Airway Disease.

Um...  What?
I know.  It's a lot.  It's a lot to read, and don't even get me started on living with it.   But we do (and "we" is a very broad word.  "We" are a team that includes Mommy and Daddy, friends, family, teachers, doctors, nutritionists, pharmacists, and online strangers whose kids have these problems too.) and we do it well.  See, I mentioned the EoE, the EC, the food allergies, the reactive airway, and the GERD.  But what I haven't mentioned yet is vastly more important.

Aidan has all of the issues above, but he also has a severely infectious laugh, an independent streak a mile wide, and a bigger smile than I've ever seen on a 1 year old, bar none.

Mommy wasn't kidding about that smile...

Let's take it one step at a time...

Food Allergies
Nowadays, most of us know someone with food allergies.  "Food allergies" can mean so many things.  Some reactions are scarier than others, but it's really important to know that a past reaction isn't a great indicator of a future one.  Yesterday's soy-related eczema flare-up could be tomorrow's anaphylaxis.  It's so, so important to be vigilant and careful, especially when dealing with small children who can't articulate how they feel.

In Aidan's case, the line between his food allergies and his EGIDs is a really hazy one.  We do, however, know that he is definitely allergic to peanuts, peas, and soy.  They are severe allergies with potentially life-threatening consequences.  We carry epi-pens for him, and are thrilled beyond thrilled to show and teach others about how to use them.  We carry a trainer pen everywhere with us and have given one to his daycare so that they can all practice using it.

There is also a list of "suspected" allergies that haven't shown positive on his last round of testing, either because we didn't test for it, it was a false negative, or he truly isn't allergic.  Those things include eggs, milk, and red dye (hello, random).  Further testing in the future should help us get to the bottom of these foods (but that's another post, for another time). 

Contact with these allergenic foods (even on his skin) can cause hives, swelling, red/itchy/watery eyes, itchy/runny/stuffy nose, itchy/swollen mouth, trouble speaking, trouble breathing, shortness of breath, rapid breathing, coughing, wheezing, vomiting, abdominal pain, nausea, diarrhea, agitation, weak pulse, anxiety, or loss of consciousness.  Obviously some of those look a little scarier than others (trouble breathing?  loss of consciousness?  Eek!) but for someone young and unable to advocate for himself, it can be hard to tell when he's really in trouble.  What looks like coughing can actually be a child struggling to breathe.  A child making "funny noises" may in fact be wheezing.  And how does a 1 year old indicate that his tongue is swelling or his mouth is itchy?

It's serious business, food allergies.  Not for the faint of heart.  And the very scariest thing?  Many people don't even know they have a food allergy until after a serious reaction occurs.

So if you hang out with us, be ready to be shown the business end of an epi-pen.  Be ready to use it.  If you have questions, ask them.  If you still don't understand, ask again!  This little guy counts on all of us to keep him safe.

This one's a lot more straightforward.  I actually know few babies that don't have some reflux in their first year of life.  Aidan's no exception here, and continues to be treated with a high dose of a Proton Pump Inhibitor (Prilosec) twice a day.  His medicine has to be compounded for him, we really wish our insurance would pay for this, but what can you do?  Any parent dealing with feeding issues would agree that whatever keeps food in the tummy is worth its weight in gold.

Ah, here we are.  This is the reason you came, I know.  The ever-mysterious Eosinophilic Disorders.  There will be many, many posts in the future explaining more about this, so I'll go with a short version for now.

Inside everyone's body are white blood cells called eosinophils.  They're super important because they help fight off nasty infections (including parasites).

In Aidan's body, the eosinophils are a bit confused.  They hang out in his esophagus and colon whenever he eats because they think food is a parasite.  They do what any good parasite-fighter would do - attack!  Unfortunately, there aren't any parasites around(I promise, we checked), and so they attack the food instead (and it's awfully hard to grow when everything you eat gets attacked before you can digest it!).  Once the food is gone, they attack the inside of his body (and this hurts, a lot.).

What this means for Aidan on a daily basis is that he can't eat.  Not that he can't eat some things.  He can't eat anything.  You know how helpful it is to distract your kid with cheerios, or bribe him with a cookie?  I don't. (But I hear it's grand.)

It's a full time job keeping food away from a toddler.  Just ask his teachers! 

Reactive Airway Disease
Reactive Airway is a way of describing how Aidan's body reacts at certain times.  It might or might not indicate asthma later on.  At the moment, it indicates that Aidan frequently coughs, wheezes, and struggles to catch his breath, especially when he's sick.  He is treated at home and at school with albuterol in a nebulizer, and he's surprisingly good about taking the treatment.

At this point, Aidan's too young for reliable diagnosis of asthma.  At his age, we call his collection of symptoms "Reactive Airway" and keep an eye on it.

So that's what's "wrong" with him.  It's my sincere hope that those of you who know him have just as much to say about what's "right" with him too.  He's a fantastic kid, he just needs a little bit of extra care to keep him safe and healthy.

There will be lots more to say about all of this in future posts, including how we got here and where we're going next, but this seemed a reasonable place to start.  Feel free to ask questions.  Thanks for listening.  Thanks for caring. 

Welcome to our world...

I'm told that the best place to start something new is with an introduction.  So here goes...

I'm Caroline.  A couple of years back, I married Tom.  A year ago, we had a beautiful baby boy named Aidan.  We live in the Philadelphia 'burbs with two cats (Stormy and Davey) and a house full of baby toys.  Tom and I both work full time, and Aidan's more or less a typical rough-and-tumble daycare kid. He's funny, he's unspeakably independent, and he's pretty much the cutest kid ever.  No, really.  He is.

Recently, several friends of ours have worked up the courage to start asking questions.  They've known for some time that Aidan has "medical issues" - an intentionally vague phrase that we use to discourage further conversation.  The reasons for keeping his issues to ourselves differ by the day.  Sometimes, it seems too heartbreaking to talk about.  Other times, I can't imagine anyone else wants to hear about it.  Mostly, I don't want people to think that this is *all* he is. 

The truth is that I'm always happy to talk about this, even on days when it seems so oppressive that I can't look at him without crying (there are more of those days than I'd care to admit).  To talk openly about it is to educate others, which will only benefit Aidan (and others like him) throughout his life.  Plus, it's therapeutic.  Everyone loves a soap box.  This is mine...

Ultimately, this blog is my attempt to answer the questions that people have felt awkward asking.  What's wrong with him, anyway?  When will he get better?  How did you know something was wrong?  Has he made any progress?  What does all of this MEAN?

I'll confess now that this is a learning experience for me too.  I don't have all of the answers (and neither do his doctors).  But like every other mom out there, I spend a lot of time learning what I can about my child and how to make his life as awesome as humanly possible.  For us, that includes scouring the web for elusive bits of information about a disease that has too few specialists and nowhere near enough research.  I'm not a doctor, and I don't even play one on TV.  I'm just a mom who's struggled and is ready to talk about it.