Tuesday, December 13, 2011

Pediatric Surgeon Consultation Appointment Made

It is crisp and sunny outside - I am VERY thankful that this winter is starting off on a mild note. I certainly hope it stays this way, at least through the beginning of January!

I made an appointment for Nolan's pediatric surgery consultation. We have an appointment for January 9th at Strong Memorial Hospital to discuss the potential Nissen Fundoplication. Rochester is a good three hours from our house, so we'll probably go up the day before and stay the night. The science museum looks like a fun side-trip, so we're thinking of taking both boys to the museum on the Sunday before the big appointment.

I am not sure what 'happens' at the consultation appointment, but I suspect we'll review his history and go over prior test results. It is possible that a few tests will be ordered (a gastric emptying scan and possibly esophageal manometry), and we will be able to ask our questions. I found a great article on Complex Child that suggests 10 questions every parent should ask before proceeding with a fundoplication:

1. Does the child have motility problems?

This is the biggest question we can't quite answer. Kids with motility problems do worse with fundoplications than kids who have no motility issues. Another gastric emptying scan and esophageal manometry will be able to help answer this question. Nolan had one GES over two years ago, which showed "borderline" gastroparesis (27% emptying time after one hour). The problem is that there is no national standard for pediatric gastric emptying times. In some clinics, Nolan's time would be considered "normal." In others, it would be considered flat-out delayed. We need to re-examine this angle.

2. Have all medical treatments been tried?

Yes. Nolan has been on adult dosages of a proton pump inhibitor and an acid blocker, and the reflux persists. When on certain antibiotics (which should improve potential motility problems), the reflux worsens or remains the same. He has failed medical therapy for reflux.

3. Has my child had the appropriate testing to rule out other conditions that mimic reflux?

Yes. There are many other conditions that mimic reflux (like cyclic vomiting syndrome, eosinophilic esophagitis, etc.). Other than the potential gastroparesis, Nolan has had all of the recommended and required tests:

a) A pH probe to demonstrate the presence of acid reflux, even on high doses of anti-reflux meds (this is the gold standard for diagnosing reflux).
b) Upper endoscopy with biopsies to rule out eosinophilic esophagitis. Nolan's upper endoscopy was performed two years ago, showed reflux damage, ectopic gastric mucosa, and blunted villi in the esophageal tract. Eosinophilic esophagitis was not present.
c) Gastric Emptying Scan. Yes. The gastric emptying scan was performed over two years ago and showed borderline delayed gastric emptying. This is a question that remains, which fits in with the first question regarding motility problems. He has never had manometry performed.
d) Upper GI Barium to rule out anatomical problems: Yes. Nolan has had two upper GI series performed, both of which showed normal anatomy. There is no malrotated intestines or hiatal hernia present.

4. Does my child have a history of vomiting, gagging, or retching?

Possibly. Nolan occasionally goes through vomiting cycles, similar to what is seen in kids with delayed gastric emptying. He often gags and/or chokes on reflux. He does not retch. Again, this ties into possible motility issues that will have to be investigated prior to consenting to a fundoplication. Since Nolan's type of reflux is not typical GERD but is LPR (extra-esophageal), motility medications will probably not help his situation greatly - both sphincters malfunction and the reflux ends up in his airway. In this case, ruling out motility issues will simply help us decide if the fundoplication will cause more harm than good, though when the lungs are affected, a fundoplication is nearly always indicated.

5. Does my child aspirate his secretions or food?

No. Nolan does not have aspiration problems with his saliva or with food. Kids who aspirate their own secretions have a harder time following a fundoplication - and a fundoplication cannot "fix" this problem since the aspiration is of secretions above the level of the reflux. This is not an issue with Nolan, fortunately.

6. Does my child have a history of neuro-irritability, visceral hyperalgesia, or chronic abdominal pain?

No. Nolan is often nauseated, but doesn't seem to be in acute pain very often. This is often seen in children who have neurological impairments, and a fundoplication may worsen abdominal pain in these children. This doesn't apply to Nolan.

7. Has a GJ Tube been tried?

This question was written primarily for children who are receiving a fundoplication for reflux associated with failure-to-thrive issues. In these children, a G-tube is often already present, and the child is not feeding orally.  For these kids, a GJ tube can bypass the stomach entirely and prevent reflux, with fewer side effects than a fundoplication, particularly for children with neurological issues.

In Nolan's case, this is non-applicable. While on the low end of the weight charts, he is not failure-to-thrive. His reflux causes apnea and airway issues, but we have the weight issue under control. He eats orally and does not have a gastrostomy tube, so trying a GJ tube is inappropriate in his case.

8. Does my child have a history of esophageal atresia?

No. Kids with esophageal atresia often perform poorly with fundoplications. This is non-applicable to Nolan.

9. Does my child have dysphagia or feeding problems?

Not really. When in the middle of a bad reflux flare, Nolan will avoid solid food. He was dysphagic as a toddler (difficulty swallowing) due to the reflux, but this has improved greatly with medication. In general, he doesn't have feeding difficulties. There are still questions about his esophageal motility, which ties in to the first question on this form.

10. Is my child under two years of age?

No. Kids under the age of two often "outgrow" reflux. Children over the age of 3 or 4 are nearly all severe, chronic, life-long refluxers. Children under the age of two should not have a fundoplication unless the reflux is life-threatening (apnea, airway, or severe failure-to-thrive are present). At the age of 4 years, 4 months, Nolan's reflux has only gotten worse with time. He will not outgrow the reflux, and faces lifelong high-dose medical therapy, which has proven to be ineffective for him.

The questions provided by this article are great, because it helps us to narrow down the relevant questions prior to consenting to the surgery. Really, the biggest outstanding question is regarding motility issues - we need to get more definitive information on this problem, particularly since Nolan had a questionable gastric emptying scan and a longer-than-normal bolus transit time on his last pH probe.


Herding Grasshoppers said...

I think you just earned another five credits toward your medical degree, Leah!

Nolan is lucky to have parents that take the time and effort to work through the issues, rather than just reacting.

Praying for wisdom,


Kyla said...

To answer your question on my blog, KayTar did not get a fundo when her tube was placed. We didn't even know she had chronic reflux at that point! She had a long history of nighttime coughing/vomiting that everyone thought was poorly controlled asthma, but as we got more aggressive with the asthma regimen, nothing changed! Finally I suggested reflux to her pediatrician, we trialed Prevacid, and the nighttime coughing/vomiting stopped! It stayed well-controlled on Prevacid until this year, so we haven't had to consider a fundo at this point.

It sure sounds like you guys have done everything possible to avoid it, so I hope it ends up being very good for him! In our experience, surgeons are not much about talking...once you have the referral, they are ready to schedule it and move forward! I expected the 3rd degree about why we were getting KayTar a g-button (since at that point it was just going to be supplemental in nature), but it was more like, "Great, we can schedule her for next month." LOL. Anyway, we love her button and she does, too. It has made so many things easier for her.

rouchi said...

You are simply amazing, gaining knowledge and doing all that you can. Wishing you the very best Leah and parayers for lil Nolan.

Magic Ear Kids said...

I hope you find answers with these new appointments and procedure. Take care - I'll be thinking of you!

leah said...

Hmmm... from what I've read, g-tubes are random with the fundoplication kids in this age group. Some place them for venting and some skip it altogether. A question for the surgeon, I suppose. I don't want him in pain from gas bloat, but I'm sort of freaked out by the idea of a g-tube, too...