Free and clear...for now

The biopsy results are in and Roo is officially a responder!  Following a ten week trial of drinking budesonide respules stirred into a tablespoon of lemon sorbet two times a day, his esophageal tissue is healed up and eosinophil-free, at least for the moment.  Psyched is an understatement.  Apparently, about 70-85 percent of people do respond to the steroid treatment, but can you blame me for not being terribly optimistic?  This is the best news we've had for a while.

He's off the budesonide now until symptoms reappear (not that they've exactly disappeared, but more on that another time).  Plans for a feeding tube are on hold as he's put on a little weight.  In fact, he jumped up slightly on the growth chart.  He's still below first percentile for weight, but he's closing in a bit.  He hit 25 pounds for the first time this week!  After more than eight months of stagnation, he grew almost an inch and his height is back tracking around the 5th percentile.  We're starting to retire the size 12-18 month pants.  And as if that's not enough, one of his two year molars is finally peeking through the gums.  Yes, he's nearly 38 months and just getting his two year molars.  Bean's had hers for about a year now. 

We're keeping dairy in his diet bringing his list of forbidden foods is down to:

• peanuts
• tree nuts
• eggs
• apple
• peach
• beef

Now we wait and see.  His symptoms will probably return as the allergens we haven't yet discovered continue to eat away at his esophagus but we can put him back on the budesonide then.  He's still vomiting sometimes, doesn't have a huge appetite, loathes many various textures in his mouth, probably has some environmental allergies, and obviously still struggles to gain weight but this was a big step.  I'll be enjoying that champagne now.

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.