Gastroparesis: Always Feeling Like You Just Ate Thanksgiving Dinner

In my post a few weeks ago about The Littlest Apple’s picky eating, I mentioned that he has something called delayed gastric emptying.  The medical term for this condition is gastroparesis.  The most common cause for gastroparesis is diabetes, but many people also have idiopathic gastroparesis, meaning the cause is unknown.  We don’t know what caused The Littlest Apple’s gastroparesis.  Gastroparesis is a chronic condition caused by damage to the vagus nerve that controls the movement of food.  (Blah, blah, medical jargon…stay with me, folks!)  As a result of the nerve damage, the stomach empties reeeeeeeeeally slowly, meaning that someone with this condition almost always feels full.  As The Littlest Apple’s dietician said on our recent visit, “He’s walking around all the time feeling like he just ate Thanksgiving dinner.”

Dealing with The Littlest Apple’s gastroparesis is our biggest battle right now (and that is saying something, given that we’re in the midst of the “terrible twos”).  It is an all day, every day kind of battle.  His pickiness doesn’t help, but even when we offer his favorite foods, he rarely takes more than a few bites because he always feels full.  He just isn’t hungry.  And he REALLY needs to eat, because he’s currently not getting enough calories.  There also seems to be absolutely no predicting the times when he actually IS hungry, so we’re just offering up food as much as we can throughout the day.  It is very reminiscent of the frequent and all-consuming feedings of a (very opinionated) newborn, with perhaps a little less screaming (I’m thankful for that, at least!).  Our schedule still revolves around feeding opportunities, and that can be very exhausting at times.

There are only a few treatment options for gastroparesis, and these treatments only offer some relief (no magic cures), if they work at all.  There are a few more experimental options available to adults (botox injections, gastric pacemakers, etc), but most of those remain untested on children, especially toddlers.  There is very little information available out there about gastroparesis in children, and that’s one reason I’m discussing our situation here.  I approach problems in life by learning everything I possibly can on the subject, and in this case, the available information is seriously lacking.

We’ve already tried several of the medicines that make the stomach empty faster with no luck, including the dreaded Reglan (with its new black box warning from the FDA…yikes!).  We’ve tried appetite stimulants too, with no improvements.

Another recommendation for gastroparesis patients is to change their diet.  Changes to diet are tricky for The Littlest Apple, because the advised diet for gastroparesis (avoid high fat foods) is the exact OPPOSITE of the recommended diet for a child diagnosed as Failure to Thrive (feed him all the butter and ice cream in the land!).  Because of The Littlest Apple’s small size, our feeding team is focusing more on the high fat, high calorie diet, and trying to treat the gastroparesis with medicine.

We had our checkup with the Feeding Team last week, and The Littlest Apple only gained 2 ounces since his last visit earlier this year.  That came as no surprise to us since we’ve been weighing him at home on a weekly basis.  Needless to say, the team is concerned (again) about the lack of weight gain.  They seem to be running out of other things to try and are discussing feeding tube options once more.  It’s never a good thing when you’ve stumped the feeding team at the hospital with the #4 Digestive Disorders Clinic in the nation.  That’s how tricky gastroparesis can be.  What works in one case might not work for everyone, and clearly, what we’re doing isn’t working….yet.

We’re giving a couple of the medicines a second try.  I’m not inclined to think they will work this time since they didn’t before, but the last couple of days The Littlest Apple has been drinking more of his Boost 1.5 (high calorie nutritional supplement) than normal.  It still isn’t as much as he needs to drink, but we’re hoping this is a trend in the right direction!  If the medicine doesn’t help (or if it doesn’t help enough), then The Littlest Apple will be getting a feeding tube.  More specifically, he will be getting a jejunostomy, which bypasses the stomach completely and goes directly to the small intestine, so as to avoid the stomach emptying issues that got us here in the first place.  Drastic yes, but nothing else is working.  People tend to get really freaked out when I tell them about the possibility of a feeding tube…because this is a very active, otherwise healthy and developmentally on track, intelligent little boy, and most people have the impression that feeding tubes are for “really sick kids.”  I know that used to be my thinking, too.  The Picky Apple and I are coming to terms with the feeding tube, and in some ways, it might come as a welcome relief to our constant stress about whether The Littlest Apple is getting enough calories, but we’re still hoping it doesn’t come to that.

Our next checkup is in mid-January…that’s our “deadline” to see if the current medicine is working.  Until then, I’ll be reporting in with the feeding team via email with weight checks and food journals.  We’re pulling out all the stops and trying anything and everything we can to get some weight on this little boy of ours, including feeding him lots and lots of butter.  I’m not just talking about butter on and in things.  Been there, done that.  Doing that.  I’m talking straight up butter sliced by the tablespoon (dietician is all for this, by the way!).  Oddly enough, The Littlest Apple loves eating butter straight up, and would be elated if I would just hand him the whole stick to gnaw on (eww!).  Not that he would take more than a few bites.  Loves the butter, but needs to eat more!

I just wanted to share a little more about gastroparesis and give an update on The Littlest Apple for those family members and friends (and other parents out there) who might be interested!  If you or anyone you know has gastroparesis (adult or child) I’d love to hear from you.