Never a Dull Moment - Dentistry

I took Aidan to the dentist today.  As expected, the screaming began the moment I took him out of my car.  He didn't recognize the building - or maybe he did - and he wanted no part of it.  It got louder and more intense with every step we took toward the doorway, and when we finally got inside, he was almost deafening.  He wouldn't even cozy up to the Ms. Pac-Man Game that they so thoughtfully provide (complete with stepstool and unlimited free plays!).

When we got back to the dentist's lair perfectly harmless room, I sat in a chair with Aidan, and laid his head down in the hygienist's lap.  She carefully chose a dye-free toothpaste and foam (Foam? No idea what this is.  Should I be foaming him?) after we talked through all twenty six of his food allergies (and let's not forget red dye!) and brushed his choppers.  Yeah, he was still screaming.

When she was done, the dentist came in and took a peek in his mouth - his teeth are nice and strong, although we still see some staining (whether from his reflux or the iron in his formula - we don't know) on the back teeth.  We'll continue to brush with baking soda at home and when we come back in 6 months, we'll discuss scheduling some OR time to have him sedated for a cleaning.  I'm calling it a win that she's unconcerned about the pacifier still.

On the way out, Aidan was rewarded with a new toothbrush, two stickers, and a yellow bouncy ball.  all was right in his little world - and he even stopped to play Ms. Pac-Man!

 

 Unfortunately, as I was buckling him into his carseat, I noticed a distinct reddening of his cheeks and a few scattered hives on his face.  Crap.  I knew I should have checked the toothpaste ingredients myself.  Allergy mom fail :(

Never a dull moment, but he's okay.  And now we know that we need to be more careful.

Update: Nutritionist & Next Steps

We had a great visit with CHOP Nutrition this week.  Nutrition visits are always great - I often feel like our Nutritionist is the only at CHOP who actually listens to us, so those visits usually consist of my brain dumping all of my problems on Mimi while Aidan screams his heart out, because he hates that place.

As usual, I digress.

This week's visit was actually really great.  Last month, we all agreed to increase his feeds and see if that made him put on any weight.  This week, we found out that he gained almost an entire pound!  This is huge news!  He's up to 25lb 5oz (4.3%) and 33 1/4" tall (1.4%).  So he's still not huge - but he's growing.  We'll take it!

Mimi also worked her magic to get CHOP homecare to start delivering our formula - which NO ONE has done for us over the past two months that we've been asking for it.  So I'm pretty sure she's basically a magician.

Next steps:

Go see GI to discuss their thoughts on next steps.  When do we scope again?  Do we keep the lemonade even though he requires daily Miralax in order to be able to drink it?

Go see the new Allergist to discuss what might be a safe food to trial. This one scares the daylights out of me, and I have no idea what we're going to try. 

In prep for seeing the new allergist, I got all of Aidan's allergy records from both allergists we've seen (Allergy & Asthma and CHOP's EE Clinic).  Nothing special in the A&A file - they diagnosed him with soy enterocolitis when he was about 8 months old, and told us to reintroduce apples and bananas.  All of their skin testing was negative.  When he was 15m old, we did environmental testing, and he tested positive to grass, trees, weeds, and dust mites.  He'd also recently recovered from RSV, and had uncontrolled asthma symptoms.  He was started on daily pulmicort and zyrtec.

The CHOP file was a little more interesting.  He was there at 12m.  He was diagnosed at that time with IgE allergies to soy, peanut, and peas.  They also noted that he could potentially have FPIES (specifically in reference to milk and rice.  I don't know why those were singled out.)  This is interesting, since no one had ever uttered the word "FPIES" to us.  And I guess it doesn't really matter since he doesn't eat anything - so we don't have to worry about an FPIES reaction.  But it might have been nice to know we should be looking out for them?  Anyway, at 19m he was Patch Tested, and positive to eggs, milk, wheat, corn, barley, potato, beef, green beans, and peaches.  He was "equivocal" to rice, apples, and oats - however he has failed rice and apples based on symptoms in the past.  Chicken, pork, and turkey were negative.  Carrots were considered negative although I clearly saw a hive, so we agreed to disagree on that one.  They recommended starting food trials.  And that was our last visit.

So long story short, I have no idea what we'll trial but it's probably a good idea to get the ball rolling with this new allergist.

It feels good to have a plan.  Or a plan to make a plan.  Or at least someone who listens and cares about my kid.

Update: April 11th - Allergy

Lately, Aidan's been coming home with swollen, red, suspiciously hive-like cheeks.  My first inclination was to blame daycare (sorry guys).  Clearly, he MUST be licking crumbs off the ground/having a yogurt facial/juggling peas when no one's looking.  CLEARLY.

As the days turned into weeks, and he was coming home the same way every day, I began to doubt the conclusions we had drawn.  Was it likely that daycare was slipping up every single day?  No, probably not.  So what then?

We decided to visit Dr. Fogg, our friendly neighborhood allergist.  He's not who we see for EGID issues, but he takes care of my allergies and asthma, and he's involved in Aidan's care too.  We really like him, and it's nice to have a local (read: non-CHOP) resource who can make the time to call you back!  I digress...

Dr. Fogg's nurse was hesitant to order environmental testing on a child so young (15m) but I insisted.  I know it's allergies.  I just know.

So April 11th came, and we found ourselves in Dr. Fogg's office for a skin test.  48 skin pricks on one teeny tiny back.  Aidan cried like it was his job when they were being applied, but a hug and a bottle (and the ability to back himself into a corner to protect his back) calmed him down. I won't lie though - watching your 1 year old cower is pretty heartbreaking...

And then we wait.  A few minutes pass, and his back is getting pretty red:

A few more minutes...  Even redder.

A few more minutes, and welts start coming up...

By the time we reach the ten minute mark, it's insane.  Clearly, this boy has some environmentals in play. 

The results?  Allergies to grasses, trees, dust mites, roaches, and weeds.  No pet allergies!!!  No mold allergies!!!

The treatment?  We've started him on zyrtec (3/4tsp) nightly and his daily hives are gone.  His ever-present runny nose?  Gone.  Amazing.

We've also been asked to consider allergy shots.  Although Aidan's younger than the rest of their injection patients, Dr. Fogg feels that it would be a huge benefit to him.  We're considering it and will make the call in a few weeks, once we're done with the move.


For the record - here's a picture of my environmental panel.  Weird, IDK where he gets it from...

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.


GERD
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.


EGIDs
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.