When we had our consultation with the pediatric surgeon, we brought up the fact that Nolan had shown delayed gastric emptying on an earlier test (called a scintiscan). The surgeon reassured us that the majority of kids with reflux appear to have delayed gastric emptying because the food goes up as well as down, resulting a a delayed time. Once the fundoplication is performed, the food can only go down and motility "improves." This was a reassuring thought and we figured the delayed emptying was simply an artifact on the test because of his reflux.
When Dr. Wonderful called me at home the other night, he told me to forget everything he told me about motility. The aforementioned is true for kids with regular, straightforward severe reflux. It is not true for Nolan.
Motility issues have brought everything to a grinding halt.
From the few tests that have been performed, it is apparent that Nolan has two motility issues (one definite, the other possible):
1) Delayed Gastric Emptying, or Gastroparesis
2) Esophageal Motility Problems
Nolan's scintiscan showed 0 episodes of reflux, but significant delayed gastric emptying. In this case, there was no reflux to create a "false positive" result. He truly has delayed gastric emptying, and it is possibly the underlying cause to the ridiculous levels of reflux.
Nolan's 24 hour impedance probe (from when he was 2 years old) showed a slow "bolus transit time" in his esophagus. This means that food took too long to get from his mouth to his stomach.
So, why are motility problems important?
If Nolan had a Nissen Fundoplication without addressing the motility, several things could go awry. His stomach would not empty fast enough, and with the top of the stomach "tied off," he could get painfully bloated. The potential esophageal motility issues are more worrisome - with a Nissen, a child could actually lose the ability to swallow food if there are esophageal motility problems.
We are going to have a repeat gastric emptying scintiscan done at Golisano Children's Hospital. If he still shows gastroparesis, then a pyloroplasty will be performed alongside the fundoplication. A pyloroplasty is the same surgery as performed on children with pyloric stenosis - it is a cut into the bottom sphincter of the stomach to allow food to empty faster. This comes with its own set of risks and benefits, which is why they don't perform this routinely with Nissen Fundoplications - it is reserved for kids with gastric emptying problems. A g-tube is always used for kids with delayed emptying with a fundoplication, to allow venting of stomach contents or air, in the event that the stomach can't empty itself fast enough.
There isn't much to be done about esophageal motility problems. This is usually an absolute contra-indication to a Nissen fundoplication. There is a test for esophageal motility, but it is quite invasive (the test is called esophageal manometry).
Anyhow, there are a few decent articles on motility problems in children. I'm linking them here for my own reference, but also to help others understand the difference between "typical reflux" and "reflux with motility issues."
http://www.articles.complexchild.com/00005.pdf: A great, plain-English description of various motility problems in children.
http://www.articles.complexchild.com/00028.pdf: A great article about the difference between "regular" reflux and reflux with motility issues.
http://www.nature.com/gimo/contents/pt1/full/gimo46.html: An article about the difference between LPR and GERD types of reflux (Nolan has LPR reflux)
Article on gastroparesis: http://www.usagiedu.com/articles/gastrop/gastrop.pdf
And then there is this little gem, about understanding the surgical treatment of reflux in the presence of delayed gastric emptying: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1422000/
"the existence of delayed gastric emptying should not be a contraindication for a Nissen fundoplication. Second, those who do operations other than a Nissen fundoplication for the treatment of reflux may wish to consider a fundoplication in the group of patients found to have abnormal emptying, as this operation is the only one that clearly improves gastric emptying. Third, in patients with delayed emptying the surgeon should not advocate a pyloroplasty, but simply a fundoplication. This recommendation, while indirectly supported by the results of this study, stems from a number of other observations. First, pyloroplasty increases duodenogastric reflux, which may damage the gastric mucosa or worsen esophagitis if the cardia remains incompetent. Second, pyloroplasty without vagotomy is ineffective in the treatment of idiopathic or diabetic gastroparesis regardless of its effects on gastric emptying. Lastly, this study and the preponderance of evidence from other studies suggest that there is a good chance that gastric emptying will be normalized after a Nissen fundoplication. If that does not occur, there is always time to reassess the situation and devise a new strategy to deal with the problem."
8 comments:
Oh Leah, more hurdles!
I remember Kerry (my husband) having an esophageal manometry. No biggie for an adult (swallow the camera) but no fun for a kid.
I'm not one for additional surgeries but if the pyloroplasty solves the motility problem and that in turn solves the reflux but they've already done the fundo then how will they know if they've solved the right thing?
It all sounds like its of sci-fi film. scary and hoping you get to the bottom of it all. Sooon.
Our surgeon is really looking at everything (former test results) and will order a new round of tests to figure out what really needs to be done. Still, his reflux is out of proportion to the amount of delayed emptying - while the lower sphincter might be overwhelmed by the DGE/excess food, the upper esophageal sphincter SHOULDN'T be. So they do think there is severe LPR reflux AND motility, rather than just motility. Particularly since motility meds haven't done one whit of good. To be honest, they're looking into neuromuscular disorders as a potential cause. There's a lot to look at here, so we have a lot more tests to run before anything is done.
So much for someone so little. I'm so glad you found Dr. Wonderful! I hope the "bigger picture" is something smaller too. It comes to a point where enough is enough and I'd want to scream out - where is the person who is going to tell me what's going on with my child - and it sounds like after all your searching and "adventures" you may be there. I hope it's somewhat of a relief. Hang in there Leah. I'm thinking about you all.
I can't count the number of times a doctor has told us, in reference to expectations for X, that "in most cases . . . " When I hear that phrase now, I cringe because I know that in most cases, X is an exception to the norm. Sounds like you've lucked out with this very thorough and curious doctor. Perhaps he will unravel the mysterious Nolan!
Leah,
I just caught up reading your blog. What a lucky little boy that Nolan is to have you as his Mama! The amt of stress that you must be under is incredible. God picks special people to take care of His special children. Good luck with his surgery and I will lift your family up in prayer!
Liz
KayTar's motility issues have crept back up on us. Ugh. It is no fun. I'm sorry you guys have them muddling up the picture here, but I hope that the additional information gathered will be worth it in the end!
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