Conner’s Gastroparesis

Two weeks ago, Conner received Botox injections to his pyloris (in his stomach area, under sedation) for his reflux/vomiting caused by his gastroparesis. 

I’m sad (and frustrated!) to report that the injections didn’t have the success we all hoped and prayed for.  Conner is still having reflux/vomiting issues, although it does appear to be slightly better.  (Note Conner’s “body bib” in the above photo—we use that to try to catch some of his vomit.)

 

In June, Conner had a 24-hour hospitalized testing procedure to help determine the exact cause of his reflux/vomiting.  The results of that testing show that he is not a candidate for the Nissen Fundoplication surgery because that would make him miserable.  The cause of Conner’s severe reflux/vomiting is that his stomach doesn’t work.  At all.

 

Our stomachs are supposed to have muscle contractions that help move the food contents out of the stomach and into the small intestine.  Conner’s has zero movement in his stomach.  None.  This means the food he eats, as well as the liquids he drinks, sit in his stomach, meal after meal, drink after drink.

 

I believe that because Conner’s small intestine has some movement, it works to help pull the lower stomach contents down into the small intestine, but the majority of Conner’s stomach contents end up coming back up throughout the day, usually a minimum of 10 times/day. We carry rags with us wherever we go, knowing this is Conner’s life.  Sometimes he vomits five times in five minutes! 

 

Conner has been diagnosed with Gastroparesis.  I’ve read that this condition can be absolutely miserable, causing a feeling of fullness always, along with nausea and vomiting.

 

The good thing is that Conner is a happy guy who isn’t showing signs of distress.  He is still considered non-verbal (he does say “momma” though!!!), but he doesn’t express his needs/feelings in any way.  He does cry when he’s severely hurt or severely upset.  We don’t see signs of distress with his vomiting though, so that is a good thing.  Watch the video below of Conner to see how happy/sweet/loving/adorable/smart this little guy is:

 

Having this knowledge helps us to understand what a miracle it is that Conner went from weighing 16 pounds at age six when we adopted him in March 2012, to now weighing 34 pounds, a year and five months later.  Conner is absorbing something from all that he eats/drinks!  And we know for sure he’s absorbing lots of LOVE!  And giving lots of love, too!  Oh how we adore this beautiful boy!!!

 

We are blessed to have two of the best gastroenterologists in the US on Conner’s case. Conner has taken every reflux (acid blocking) medication available.  None work 100% because of the gastroparesis issue (Conner's reflux isn't due to traditional reflux-causing issues, instead, it's a volume issue--the more volume in Conner's stomach, the more he vomits, since his stomach doesn’t move the food/drink out the other traditional way).

 

Conner has been on Erythromycin and Reglan to treat gastroparesis, without success. Conner's GI specialists want to move to the next step by trying a medication called Domperidone, which is not FDA approved in the US due to risk of sudden death and cardiac arrhythmia. The medication has a great success rate in helping gastroparesis, but we feel like the risks of the medication are greater than the benefit.  Because Conner had confirmed cardiac issues (unspecified) in Ukraine prior to our adopting him, we feel he’s at greater risk of developing cardiac problems from using this medication.  If our precious son died as a result of trying to treat his vomiting, we would be devastated (of course).  We just don’t feel like we can take that risk.  If Conner were to take Domperidone, he would have to have an EKG every two weeks, along with labs every two weeks, but even with that level of monitoring, he could still die of a heart attack caused by the Domperidone.  There are no studies available in the US of using Domperidone on children, particularly children with Down syndrome who were born with a heart defect that has since repaired itself.

 

We’re grateful to have received lots of helpful advice/feedback via Facebook friends regarding other things to try to treat Conner’s gastroparesis.  We’ll be visiting with Conner’s gastroenterologists to determine other possible avenues to try.  We are grateful for prayers of healing for Conner, as well as wisdom for his specialists in how to successfully treat Conner’s gastroparesis.  Thank you!