Friday, November 30, 2012

Russell's digestive woes

Russ was scoped the day before Thanksgiving.  Remind me never to have a medical procedure done just before a holiday.  It took a whole week to get our results back!  I was going nuts!

Here is the status of my baby boy's digestive tract, starting at the top:

A) His esophagus has 2 eosinophils per high power field.  In order to have a diagnosis of Eosinophilic Esophagitis (EoE), he must have at least 15 eos/hpf.  And there are some telltale signs of EoE when looking at the esophagus with the naked eye, such as furrowing (although I'm not entirely sure what that is...), and Russ' esophagus was beautiful.  Lovely color, nice and smooth, good blood vessels.  So his esophagus is of no concern.  Yipee!

B) His stomach appeared healthy, but the biopsies showed inflammation.  So he was diagnosed with "gastritis."  There wasn't a single eosinophil.  Hooray!

C) His duodenum was also inflamed on the biopsies (diagnosis: duodenitis), and there was something going on with the villi.  I can't remember exactly how she described the villi (which function to absorb nutrients, so when they malfunction it results in malnutrition), but she said that the abnormality was caused by reflux.  We will be starting him on a prescription reflux medication twice a day and hopefully that should be all that he needs to feel better!  Wouldn't that be nice?  But somehow I don't believe that it's going to happen.  I'm going to call the GI doctor next week to check, but everything I can find about abnormal villi is related to Celiac Disease.  He shows no signs of reflux in his esophagus and no outward symptoms, either.  And most babies with reflux (virtually all of them are born with it to a degree) outgrow it by the time they are one year old.  So why would Russell just now be refusing food to a greater extent than ever before?  It's puzzling.  But there wasn't a single eosinophil in his duodenum, which is great!  (That's where Caleb's eosinophils reside.)

D) His colon was technically considered healthy.  They only did a sigmoidoscopy, which is like a mini colonoscopy, so it's possible that they didn't get as good of an idea of what's going on in there as they could have with an entire colonoscopy.  The biopsies did show 38 eosinophils per high power field.  It is generally agreed (from what I have found) that 40 eos/hpf warrants a diagnosis of Eosinophilic Colitis (EC).  But since EC is so rare, and the "healthy" number of eosinophils in a person's digestive tract varies based on where in the country you are, there technically isn't diagnostic criteria.  Stinks, huh?  My kids are just that rare.  Well, maybe.  From what I understand (and I have a lot to learn), I very well may have 39 eos/hpf in my colon and I don't have symptoms of EC.  You may have 35.  But generally, once a person has 40, they show symptoms of EC that warrant treatment.  But really?  Russell's biopsy was two eosinophil cells short of getting diagnosed with EC.  Eosinophilic disorders are a "patchy" disease, meaning that you could take a biopsy in one spot that showed lots of eosinophils, and move over an inch and find none.  So although our GI took multiple samples (I think she may have only taken two...but I'm not sure), if it were to be done again, he might end up with a diagnosis.  Or it might show even fewer eosinophils.  It's hard to know.


Deep breath.

Our GI didn't say this, but in my mind, if the reflux meds don't help anything (ie, if he doesn't start drinking significantly more, since drinking two ounces a day is pretty darn awesome for our little anorexic baby), then we may assume he has EC.  I will either talk to our GI doctor about the possibility, or I will seek out a second opinion.  I'd rather not do that, because it might mean putting Russ under anesthesia again for more biopsies.  I would hate that.  He would hate that.  I promise, I'm not looking for a diagnosis, I'm looking for answers to why my baby doesn't want to eat and drink enough to be healthy.

Don't you hate it when it's in your child's best interest for them to suffer more in the short term so they can suffer less in the long term?

Story of my life.

Let's just hope the reflux med works and that's that.

1 comment:

MeganandClaudy said...

I feel the same way. I swear sometimes friends--and even family act like I WANT something to be wrong, or that I'm hunting for something out of the ordinary. They keep telling me "things will work themselves out..." etc. If only people knew how desperately we would love for that to be the case. Hopefully Rus can see some great results with the acid reflux medicine. He's lucky to have a mom so dedicated!