Thursday, June 23, 2011

A GI update on James

James went to the GI on Tuesday and we were able to talk through some of the struggles he is still facing with eating.

A little background... James has had feeding difficulties since he was very small and has failure to thrive.  He had a g-tube placed around 2 years old and was dependent on night feedings when we met him, taking only a few ounces at a time orally over the course of the day.  He wasn't actively taking much during a spoon feeding of purees.  James also has fairly severe reflux.  He will 'urp' little bits throughout the day even while on Prevacid, which is an increase from the med he was on before we met him (his foster mom had it changed just as we were getting him!).  James has gone from tube/bottle fed with the majority of his calories coming in over night while he slept to being completely self-fed with a cup!  We are very proud of the progress he is making developmentally, but, unfortunately, he still is very small and... there's no good reason that an almost-5-year-old little boy shouldn't be able to eat a cookie... unless there's really an underlying health issue.

Herein lies our query, and that of the GI doctor as well.  Do we push and give him solids despite his constantly bringing them back up even hours later?  Could it be that his anatomy is unusual and the 'chunks' of french fry that we gave him actually CANNOT go down?  We don't want to keep "trying to see" if it will work if there really is something wrong on the inside that's preventing him from keeping down anything more than a puree... and often times even the purees come back up if given in much quantity at once.

So... Monday James is scheduled for a gastric motility study.  We'll see how quickly things are moving through the system and whether there are any 'hangups' along the way.  Friday, James will be having an upper GI done, which will tell us about the physical anatomy of the upper GI system using Barium, to be sure there aren't any twists in the intestines or other abnormalities.  And we are waiting for an EDG (um... I think it's EndoDuodenalGastrointestinal) scope to be scheduled (this he will be sedated for and is scheduled as a surgery) which will show what the lining of all those structures look like and possibly work on anything unusual that is found.

For now, we continue to get him to take the 4 1/2-5 cans of thickened Pediasure each day and wait for these tests to be completed.

(PS: James was in an excellent foster home from birth until placement with us, and his difficulty with eating is not a result of neglect, etc before we received him.  It's just James.  :)  )


  1. You probably already realize this, and if so, please just ignore... But for the barium swallow study, make sure they know not to give thin barium. :) I'm an SLP masters student interning at a hospital right now and we occasionally see patients who have had barium swallow studies done and were given thin barium even though they require thickened liquids. The studies end up having to be discontinued because the people aspirate which leaves the person at risk for developing pneumonia and the GI docs with no useful information.

  2. Hey,
    We found (through our GI) some juice boxes that are really high in calories. It is a change for K from the *milk*. They come in apple and berry and are 200 cals for 198mls. ALL my kids LOVE them! They are called Enlive! by Ensure!

  3. I was gonna say, he needs motility testing done. Alot of our kids have really slow motility (Angela's food sat in her stomach a full 18 hours!) When she had her nissen done they also did a partial pylorotomy (cutting the pyloric muscle) to allow her stomach to empty at a normal rate. By the way, I haven't forgotten to respond to your email....

  4. EGD is Dr speak for what we normal people call an Endoscope.