Oh Puke

Why is he still puking so much?  Once last night.  Again this morning, at the dentist I might add.  Incidentally, he's been asked to refrain from all food and drink prior to dentist visits from here on out.  And again tonight at bed time.  How awesome will it be if he's allergic to Budesonide?  Is that even possible? 

Sweetening the Deal

The biopsies are back and lo and behold, Roo's eosinophil counts are worse than ever.  How the heck?!  I have no idea.  Lot's of theories but no answers. This seems to be a trend with this nasty disease.  He's up to 60-70 eosinophils per high power field.  I think his highest count before that was in the 30's so this is not encouraging.  The diagnosis is anything above 15 per hpf. 

Our current theories for the spike include everything from a tomato allergy to a brand spanking new soy allergy to the mold-infested humidifier we diligently placed by his bed following the infamous croup episode after his scope in November.  Fortunately, none of these are relevant at the moment because they are all giving me a headache.  Or maybe that's the mold.

Roo is nearing his big 0-3 birthday and while we'll be sure to mark the occasion with "Under the Hill" balloons and allergy-free treats, he still tips the scale at 23 pounds and at almost 34 inches, he hasn't added height in months.  It's time to take his treatment to the next level.

We've opted to medicate him with Budesonide (the generic name for Pulmicort - a hot topic on the EoE scene these days!).  Twice a day for 8 weeks he supposed to drink a slurry of asthma medicine mixed with multiple packets of Splenda.  Please disregard the "For Inhalation Only" warnings on the box.

As you might imagine, given the oral delay, sensitive gag reflex, food aversion, and pure hatred of anything too sweet the Splenda slurry is not really working out.  Raspberry sorbet on the other hand, seems to be doing the trick.

So, we've been mixing his meds with about a teaspoon of sorbet.  He is on board with his am/pm ice cream treats and I am stunned that we found a way to get him to take it.  The one potential for disaster here, of course, is that I just emailed our GI team to let them know I'm using sorbet, not Splenda.  I expect the phone to burst into flames at any moment.  Fingers crossed.  Taking it has to be better than not taking it, right?

So from here, once again, we wait and see.  If it works, the budesonide is a way to mask symptoms not cure the condition but we're hopeful that if we can make him comfortable for any length of time and get some weight on him, we'll be better prepared to address his diet once symptoms return.  We're taking the first tiny steps toward embracing the idea of a g-tube should it come to that.  And above all, trying our best to focus on the good stuff.  Like raspberry sorbet.

Law of Attraction

We're still waiting on the biopsy results from the last upper endoscopy but as I mentioned, the scoping doctor already crushed any lingering hope we might have had that Roo's improved.  So, I've been sitting here stewing for the past week trying to wrap my head around the idea that this EoE crap isn't something he's going to simply outgrow.  The allergies continue to increase with no signs of outgrowing anything.  I'm preparing myself for the placement of a g-tube.  I've joined a couple of online support groups for families dealing with eosinophilic disorders.  I'm thinking about how the rest of us will continue to take meals when Roo is the pariah with the tube.  I've put all our air travel plans on hold until the little kids are in college. 

Before this latest scope, Roo was doing better.  Really better.  He was eating enthusiastically, trying new foods, gaining weight for crying out loud.  He was happy, enjoying school, running around like the crazy 2-year-old he's supposed to be.  Then, all it takes is one scope where some doctor we've never seen before in our lives tells us that he has made absolutely no improvement and we are worse off than when we started.  Now Roo's suddenly acting uncomfortable and grasping his throat when he eats.  He's vomiting again.  He still has the remnants of the croupy cough he developed from the breathing tube.  He's waking up several times at night.  We've increased his allergy suspect list to include:

tomatoes
corn
fructose
food dyes
cinnamon
yeast
lentils
peas
lamb
soy
wheat

(in addition to dairy, egg, peanuts, tree nuts, apple, peach, and beef of course)

I'm spending countless hours re-imagining our lives as a family - no unnecessary travel, few - if any restaurant meals, limited play dates, private school (home school?) since I can't trust the public school (or maybe ANY school) to provide a safe eating environment for him let alone prepare food he can actually eat.  And it sucks.  We sit and wallow and wait for the next shoe to drop because while I thought we'd lost our best pair months ago, it looks like we're dealing with a centipede. 

The more we sit at the hospital doing tests, the more research I do, the more EoE families I talk to, the worse Roo's symptoms seem to become.  This cannot all be in my head.  Every time he takes a small step forward someone comes out of the woodwork to take it away and push him back down and I'm so tired of it.  I know it's a long road but we've been at this for over 18 months now.  He has earned the right to some forward progress. 

Yes, it may be a bit flaky even for me but I'm totally buying into the Law of Attraction here.  If you're unfamiliar, the Law of Attraction is this metaphysical, unsubstantiated, Oprah-endorsed theory that basically rests on the belief that like attracts like.  If you have positive, happy, healthy thoughts then positive, happy, healthy things will come to you.  On the contrary, when you sit in the doctor's office attached to a bunch of tubes and wires being told how unbelievably sick you are day after day, you're likely to feel sicker. 

Our biopsy phone call should come today or tomorrow. 

Scope 5

Once again things didn't go according to plan.  I don't know why I keep setting expectations for these things anyway.  The EoE is still there.  There were clear visible signs in the photos and Super EoE Doc informed us he's very well versed in judging the photos and well, the EoE's still there and active.  Of course the official biopsy results will be back some time next week but it doesn't really matter. 

The polyp is still there but on a bright note, today's physician claimed it is not a polyp but rather a "bump", which is great since now there are more of them.  He claims they are associated with EoE and are further evidence that the allergy cells are still alive and thriving.  He took a sample of the biggest bump just to be sure. 

To add to the excitement, Roo is once again experiencing croup following the breathing tube and anesthesia.  He seems to have a reactive airway which means we got to spend a couple of extra hours in recovery while he coughed up blood, received nebulizer treatments, and got some steroids via IV.  We're keeping our fingers crossed that it helps prevent another ER visit tonight. 

We're crushed.  Had big hopes for this one.  He's off everything he was off when he got a clean scope over a year ago so we're back to square one.  We're still a step away from tube feedings but this is a dangerous path we're on.  I fear we're just really getting started.

Big Day

Barring any unforeseen, or, since big sister is infected with some sort of hack-inducing bug, foreseen complications, Roo's long awaited 5th scope is tomorrow morning at 7 am sharp.  So, in order of preference, my wish list goes something like this:

1. No more polyp or other strange masses
2. Assuming wish #1 doesn't work out, polyp biopsy comes back negative for anything truly nasty (assuming they remember to take one this time grr....!)
3. EoE scope is clean (i.e. no allergy cells in the esophagus)
4. No emergency room visit tomorrow night
5. Massive rapid weight gain over next several months
6. Successful reintroduction of dairy in 6 months or so followed by...
7. Outgrowing of additional current allergies and no new ones ever

They reminded me that I have to bring him his own juice to drink in recovery since the standard offering is apple juice.  Even on The Island of Misfit Toys we're misfits.

Results? What results?

For those of you anxiously awaiting results from Roo's big polyp biopsy last month, you might want to get comfortable. In a sudden 180, the hospital now claims that no polyp biopsy was ever taken.  I beg to differ seeing as...

1. I spoke directly with the doctor who performed the scope immediately following the procedure.  He showed me pictures of the polyp and assured me that he took biopsies from the polyp itself, as well as the surrounding tissue. Results would be back in about a week. 

2. After calling to follow up for over a week with no results, our case managing nurse practitioner contacted the scoping doctor to be sure that he had in fact taken biopsies.  She reported back to me that he did, they were just taking a while in pathology.

3. Most convincing to me is that who in their right mind, while in the midst of scoping and taking biopsies from a sedated toddler's esophagus, upon discovering a foreign mass would choose NOT to take a sample of it?! Wait for another day?  Another round of general anesthesia? 

Well, anyway, that's the story I'm getting.  With back paddles splashing faster than a rafting team heading for a waterfall, our GI team claims that a miscommunication led to my erroneous assumption that a polyp biopsy was ever taken.  In addition, pediatric esophageal polyps are nearly always benign and it's no big deal because we'll take another look at his next scope.  And this time the one doctor who really knows about EoE will do the scope - you know, the one we wanted to see but couldn't get an appointment with because he gets really really booked up with the patients who opted into his research study on EoE?  Really?  Mind if I take a knife to your kid's throat repeatedly?  If I don't get what we're looking for, don't worry about it.  I'll call in someone who does.  It will probably be fine. 

I've had a couple of weeks to let this sink in now and the initial fury has dissipated to a more general seethe.  Basically we can't change anything at this point.  There's not exactly an abundance of brilliant, well-funded, pediatric EoE teams even in our booming metropolis.  I'm beginning to take a hard look, however, at what that brilliant team from the well-funded hospital is getting us.  Maybe small, independent, and kind of smart is more our speed.

Same day. Different hospital.

Sooooo...let's just say things didn't go exactly according to plan yesterday.  We started out well enough with Roo and I both surprisingly chipper to be up well before dawn.  He was a regular bundle of cotton candy and kisses, spotting city buses with a commuter's precision, singing endless verses of The Wheels on the Bus, practically bursting the seems of his blue stripey pj's and woolen winter hat with incomparable cuteness.  It wasn't until we neared the hospital 30 minutes away that he started to wane.

"I want my Kaloo." 

Oh crap.  Kaloo.  Imagine my horror at realizing mere moments from IV insertion, that I had forgotten Roo's beloved Kaloo bunny at home.  I mean, we don't go to the grocery store without Kaloo.  Surgery?  Are you kidding?

Somehow we made it through the procedure but it wasn't pretty.  He had a rougher time coming around from the anesthesia than I've grown accustomed to, and the fact that he was hacking like a seal and spewing bloody saliva afterward didn't help matters.  That hadn't happened before. 

The immediate results from the scope were mediocre at best.

Good news: the GI doc performing the scope did not see evidence of furrowing or white plaques that were spotted last time.
Bad news: There's a polyp in Roo's esophagus and he has no idea what it is.

Obviously we won't know anything definitive until the biopsies are back late next week.  Until then, we wait.

Having conquered the beast that is toddler surgery, Mufasa and I were all too happy to turn into bed early to face the polyp issue with clear heads in the morning.  Our sweet dreams were soured, salted, and stewed at 2:30 am when Roo awoke barking, sobbing, vomiting, and gasping for air.  I've experienced the Stridor of Croup a few times in this motherhood stint but this was different.  The kid couldn't catch his breath, his stomach was sucking in so far in with every breath I swear I was seeing his spine.  He was throwing up and choking.  Then his lips started getting a little blue.  Off to the ER.

Two breathing treatments, a second IV in 24 hours, plenty of steroids, more vomiting, 2 rectal temps, and 4 and a half hours later we came home.  He's bruised, coughing, exhausted, and covered in medical tape he won't let us peel off, but as usual, still smiling.  So hoping tonight is less eventful.

Vomitathon

For a while there I thought we might be trending toward less retching and spewing.  Four times this week!  One crying induced choke when the babysitter showed up, one regular old-fashioned gag on the very last bite of an hour long dinner session, one middle of the night milk disaster, and one inexplicable couch vomit that even he had no idea was coming.

What gives?  He's off milk.  Off eggs.  Off nuts.  Off any bites larger than a dime.  He's working on his chewing and maybe even starting the get the idea, if not the hang of it quite yet.  He doesn't seem to be in pain.  He's happy - often immediately before he pukes and almost always immediately after.  There's the runny nose factor, which always makes his feeding and throwing up worse, but if that's going to be the deciding factor, there's no recourse but to move.  Runny noses are a way of life here until mid-April at least. 

The thing is, I don't even care about the mess anymore.  It's rather like changing a diaper - though I wouldn't mind giving up that gift of motherhood soon either, and despite the thousands of changes I've performed, I would still opt against doing it on the table of a crowded restaurant.  It's all the work that goes into it.  After an hour of helping to spoon tiny nibbles of hearty gnocchi in oil-rich marinara and fluffy egg-free, dairy-free meatballs into his mouth, he gives it all back on the last bite.  Last night, he put away nearly half a chicken breast, couscous, and a few green beans.  Happily, he fled the table, played with his beloved Silly Bandz for ten minutes, then puked all over the couch.  He explained that his tummy never even hurt.  He didn't know he was going to throw up. It surprised him as much as the rest of us.  At least it was bath night.

Maybe the EoE's still bothering him.  The next scope's set for November 5.  In the interim, there's the allergist appointment, flu shot sequence, and pre-op physical preceding the scope.  It's a laugh a minute for this kid.

Boycott

Roo's on strike, and since he's a one man union, I don't know who to contact regarding negotiations because he's not talking.  Bored and irritated with my my cheek prodding, chew tube thrusting, and constant encouragement to "move it to the side", he is refusing to participate in mom-imposed speech therapy sessions.

We're at an impasse marked by lengthy standoffs where he holds lumps of soggy chicken or rice in his mouth while ever enthusiastically, I prompt him to move it to the side, and chew chew chew a hundred times or so.  When that doesn't work, we pull out the mirror and I show him how disgusting it looks oozing out of his mouth - okay, I don't tell him he's disgusting, but it doesn't mean I don't think it.  The mirror's supposed to help him see where he's moving the food.  He prefers smearing food on the mirror to see how that looks.

I am a broken record.  Move it to the side, Roo.  Use your tongue.  Use your tongue to move it to the side like this.  OK, good try, now use your teeth.  Chew it here on your back teeth.  Feel it there by your cheeks?  I see the food in the middle of your mouth.  Can you move it to the side?  Now chew like a lion!  Like this, see?  Swallow your bite.  Did you swallow it?  You did?  Vigorous applause, stickers, and a three ring circus ensue when a bite is eventually swallowed.  The poor kid.  Even I am annoyed with me. 

Is he going to outgrow this oral delay?  I mean, aside from the food allergies, EoE, oral delay, and failure to thrive, he is, ahem, healthy.  His gross motor skills are on track - if not outright advanced.  Can most 2.5-year-olds do the monkey bars without assistance?  Maybe if they weighed 22 pounds they could.  His kids' gym class teacher recently recommended a "real" gymnastics gym for him after witnessing his superior balance, strength for size, and fearlessness.  Of course she probably thinks he's one.  He talks like a champ...for example, "Actually Bean, we watched Yo Gabba Gabba earlier.  How about we watch Ralph? It's your favorite!"  or "That was a little bit whiny, Bean.  I don't like that.  Say it again in your regular voice".  Aside from the obvious exploitation of Bean for his own benefit, these are adequate sentences for toddler boy, no?  He walks, he runs, he jumps, he sings, he dances, does somersaults, and flips, he builds Lego towers, pees in the toilet, and has mastered my iPhone.  The kid is like a tiny ninja, so why the heck can't he chew a bite of pasta?

Off the Sauce

The verdict is in and while it wasn't what we wanted to hear, at least we can begin healing up Roo's welted, pus-ridden esophagus now.  I still have no idea how or why we didn't notice any change in eating habits, behavior, etc. with the reintroduction of milk last spring, but I do know that all those cheddar goldfish crackers and ice cream cones this summer were not as innocuous and they seemed.  Aside from the white plaques and pus, his eosinophil count was back up to 20-30 hpf (per high power field in the microscope).  Normal is zero.  Chronic GERD sufferers can have up to about 5.  Our hospital makes the EE diagnosis with 20 hpf, some places diagnose anyone above 15 hpf.  So, it could be worse since his initial count was 70-80 hpf a year ago, but needless to say we've eliminated dairy once again.

Believe it or not I'm still waiting to hear what our official course of action is from the doctor's office.  We've been instructed to take away all the milk, whey, casein, etc. and we've made the switch back to soy infant formula with much less kicking and screaming than I anticipated.  I'm guessing we'll need to rescope in 8-10 weeks to see if he's clean but don't know for sure.

We're heading back to speech therapy for a new evaluation on Friday.  I can hardly wait.  I am so looking forward to a day when every meal takes less than an hour to consume.  He tries but he's just so painfully slow, and then of course, there's the constant threat of the gag.  He threw up Saturday night moments before the babysitter arrived, and gagged on a chick pea at breakfast this morning.  I don't know what I was thinking with the chick pea.  Just got a little ahead of myself, I guess.  Depending on how the new evaluation goes, we might need to start looking into some early intervention programs for the oral delay.  Hmmm...why do I feel like I've been here before?