Monday, January 31, 2011

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.

Wednesday, January 26, 2011

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:

food dyes

(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. 

Sunday, January 23, 2011


I know it's not going to be terribly productive to start blindly eliminating more foods but I'm having an overwhelming tomato suspicion at the moment.  Over a year ago Roo wasn't eating much tomato...perhaps here and there.  That could explain the "clean" scope.  These days he's a regular ketchup lover and has recently taken to those luscious little rubies otherwise known as grape tomatoes.  

Tonight, while dipping his fingers into ketchup and licking his fingers, I swear he got a little rash on each cheek.  It was slight and Mufasa wasn't here to verify, but it was there.  And it hadn't been there a minute ago.  It eventually went away but then he threw up tonight after dinner.  This one seemed like a clear reaction to oral delay or gag to speak of.  So, I'm left wondering.  Maybe it's the tomatoes.  Then again, patch testing to tomatoes was negative so...ugh.

Wednesday, January 19, 2011

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.

Tuesday, January 18, 2011

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.

Wednesday, January 12, 2011

Vague Intentions

Happy New Year!

Typically I'm a resolutions girl.  I love a good, measurable, finite challenge.  Resolutions past include:
  • Lose 25 pounds
  • Run the Chicago marathon
  • Try a new recipe every week 
  • Learn to play tennis
  • Take more writing classes
  • Become licensed massage therapist
  • Start a blog
  • Publish something...anything
With the exception of a few minor pitfalls, (still "working" on my novel, inactively seeking out an opportunity to coach a field hockey team and longing to learn how to play guitar) I've been successful with resolutions.  This year, however, the air is filled with far too much uncertainty for resolutions.  There are too many scopes, doctors appointments, new allergies, A1c tests, constant dietary manipulation, stomach flus, skin rashes, vomiting episodes and other surprises around every corner for any kind of focused marathon training.  Keeping everyone alive and fed is still a top priority. 

So a slacker's list it is.  My vague intentions for 2011 are not revolutionary by any means but they all lean toward achieving some semblance of personal balance that's been lacking since, well, I suppose since I got pregnant with twins in 2007.  Write more.  Sweat more.  Eat more good stuff and less bad stuff.  Spend less.  Play more.  Worry less.

Roo threw up carrots at school yesterday.  Next scope is 1/19.  Baby steps on that worry part.