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.
I follow EoE through Google Alerts and have seen some of your past posts but today's struck a cord with me as I went down the same path. Just wanted to let you know that we ended up going with the g-tube one year ago this month and have never regretted it. The idea was more scary than the reality. My son has put on 8 pounds and grown almost 4 inches. He's still small, we still do the six-food elimination diet and we're giving speach / occ therapy a try this month to work on the feeding aversion, but at least he grows and can pay attention in school. These are hard times for you and your kids, but just know that the alternatives aren't necessarily as scary as they seem. Best to you and your family!
ReplyDeleteThanks for the encouragement, Kris. We've heard so many positive stories from families who have gone the g-tube route that I really am starting to feel ok about it. What amazing growth for your son this year - that is awesome! We're still contemplating the 6-food elim but won't attempt it until his weight is stabalized and/or he's on a tube. We just finally got off a waiting list and started speech/feeding therapy 2 weeks ago. Good luck to you as well and thanks so much for sharing your experience. It really does help!
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