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Tuesday, January 8, 2013

Delayed Gastric Emptying

I've learned a lot of acronyms in the last 3 years. One of my least favorite is DGE. Delayed Gastric Emptying. It is exactly what it sounds like: a stomach that empties more slowly than it's supposed to. DGE has been Raya's nemesis (out at least one of them) since she was a tiny baby. Although it's difficult to measure how much milk a breastfed baby drinks at a time, I was always amazed at the seemingly disproportionate amount of vomit that could come out of that child. The amazement didn't stop there though. She also had a knack for vomiting up tiny beads of Prevacid as much as 5 or 6 hours after she had swallowed it. The interesting (frustrating, annoying, etc.) thing about DGE is that it comes and goes. A person's motility can be totally normal one day and slow as molasses the next.

One way to detect DGE is with another fun acronym: NMGES. Also known as a nuclear medicine gastric emptying study. Raya's had it done twice. First, they put some radioactive stuff in a little bit of formula (not enough, if you ask me) and put in through her tube, then they strapped her to a table and slid her under the scanner like a little Raya sandwich, and then she got to lay there like that for about an hour. Lucky for her, she had her DOC band (cranial orthotic) to use as a pillow.
May 2011
It was super fun, especially the part where the results came back as another one of my least favorite acronyms: WNL (within normal limits). Um, remember how this girl can vomit up Prevacid and even barium several hours after ingesting them?? The results of her 2 hour NMGES several months later were also WNL, which I again found very frustrating. Especially considering that we had flown clear across the country that time for testing and WNL was not what I wanted to hear because we KNEW there was a problem. At that time though, I was reassured by the motility specialist that it was actually a good thing that her results came back WNL even though we knew she had DGE. When he said that, I wanted to cry. How is that a good thing?! I get it now though. He said that having the test results show near-normal function meant that we knew her body was at least capable of normal peristalsis. It still wasn't what I wanted to hear, but it's true. It's good to know that her body is capable of normal function even though it's not always normal. (at that point, the 2 hours during which she was having the test done were the ONLY time it was normal...)


Raya's motility has been a roller coaster her whole life, but in the last 3 months since we moved, we've been on the part of the roller coaster where you're getting flung all over the place unpredictably and mercilessly while saying a prayer that the safety bars stay in place. Just when we think she's getting back to her previous level of function, she has a really lousy day and we're going backwards again. Today started out fairly well but ended as a not good motility day. (you know, kind of like a bad hair day only it's a bad gut day?) She actually ate a lot today. More than she has eaten in a year, pretty much. She asks for food all day long. When it's meal or snack time, I give it to her. Today, she ate 2 of her gluten free crackers, applesauce, part of a quinoa pancake with syrup, some of the wheat free cornbread I made her, and chili beans (ok, mostly just the sauce). She had 2 formula feeds earlier today and another one at bedtime. After she'd been asleep for an hour or two, she woke up in obvious discomfort. We waited to see if she'd go back to stereo and she did after a couple minutes. Then 2 more hours went by and she's crying again. The second time, I got her out of bed to see what was wrong. She wouldn't talk or answer questions or even nod her head. I started to burp her with a syringe but after formula started coming out, I connected a Farrell bag and dropped it on the floor to drain her stomach. It kept coming and coming until her stomach was empty and air was coming out instead. She felt better as soon as her stomach started emptying, and her belly wasn't distended anymore like it had been. When all was said & done, there was 120 ml in the Farrell bag, which was about half of the feed, and it had been 4 hours since the start of the last feed.
 
 
Granted, part of that is remnanats of the gluten-free cornbread I made her for dinner, which she seemed to really like. She ate about 4-5 cubic inches of it (that's how I measured it because that was the easiest way to estimate calories). I'm a little scared of the fact that she woke up crying twice and eventually had to have her stomach drained in order to feel better. I don't know if that means she's having more motility problems or if she's starting to not tolerate something she's been eating. That would be crappy because she's been eating a decent variety of things lately and goodness knows which thing might be bothering her.
**Side note: until Raya was born, I had no idea that motherhood would mean repeatedly and intentionally sniffing my kid's belly puke in order to determine if the belly puke is mostly formula or solid food. I think there's a reason nobody tells you these things beforehand.
 
The idea of doing another GES has come up in the past 3 months, but most likely it would come back WNL again because that's just the way tests always seem to go for us. And like I've said over and over again in the past 3 months, when you can get half of the feed volume back out of the stomach 4+ hours later, the kid has DGE. Period.



2 comments:

  1. It's wild, isn't it? Nobody told me about sniffing belly contents either. In fact, nobody told me a lot of things. We are still figuring out my kid's motility - it changes every single day. Many days, he tolerates his formula fine (at 55ml/hr over 18hrs - never faster and often slower). The past month he has been fighting a clear runny nose and a mild cough but it has shut his stomach completely down. Vomiting nonstop - last weekend, he ate 2 apple chips at lunch on Saturday. Late Sunday morning he vomited those apple chips back up. Almost 24 hours had gone by. Those apple chips should have been long gone. That happens all the time with solid food. His stomach just can't handle it. We had epic projectile vomiting as a newborn too. Nurses and doctors said there is no way he is vomiting up as much as he takes in - it looks like more because it mixes with saliva, etc. but I knew better. He was DGE back then but nobody knew it or refused to see it. And I had no idea that DGE even existed. If I had been more aware...

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  2. Yep. They really need to find a way to do the test with a full meal and not just 2 measly ounces. My son's last year came back completely normal, even though for every early afternoon GI visit (GI was doing all button changes because my son had some concerning intra-stomal GT that they thought could be prolapse), He still have several ounces of breakfast in his stomach from six hours earlier. It was so frustrating! We've had two (our first two, actually) accidental tube pull-outs in the last few weeks, both of which took place several hours after breakfast and pretty much all of his breakfast erupted out of his stoma, looking exactly the same as it did when it went in. So I wonder if there's a point to repeating it. He obviously has DGE to some point, but I highly doubt 2 oz. is going to show it.

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