Nolan's surgeon called on Monday. Nolan's case had been presented to the GI team, and they reviewed all of his records. Nolan's reflux is very severe, but his records are a little confusing.
His initial tests (in 2009, prior to diagnosis) were:
Upper GI Barium X-Ray: Entirely Normal (normal anatomy, no reflux noted).
Gastric Emptying Scintiscan: Delayed Gastric Emptying (gastroparesis) noted, normal for reflux.
The other tests from the ENT's office included:
Pharyngeal pH probe, done ON medication (Nexium): significant airway reflux detected.
Pharyngeal pH probe, done ON medication (Nexium + Zantac): significant airway reflux detected.
Upper GI Barium X-Ray (2011): Normal anatomy, one episode of reflux noted.
Fortunately, the remainder of Nolan's tests from the GI doctor's office arrived. Those tests included:
pH Impedence Probe (dual channel): Severe reflux, slow bolus transit time.
Endoscopy with Biopsy and Pathology report: Reflux esophagitis with cellular dysplasia (Barrett's Esophagus).
Whether Nolan has delayed gastric emptying or not is completely insignificant now, because he has cellular changes in his esophagus - these cellular changes are very, very rare in children. The severity of Nolan's reflux, coupled with the respiratory symptoms, is enough to warrant a Nissen Fundoplication. With the cellular changes evident at the age of two, a Nissen Fundoplication is the only real way to proceed.
Barrett's Esophagus is a condition that predisposes people to cancer. The cells exhibit specific changes, and over the course of time, can turn into esophageal adenocarcinoma. The average age of diagnosis for Barrett's Esophagus is 55 years - in other words, the average person with Barrett's is a senior citizen.
Since children with this condition are so very rare, many GI doctors will not see a child who has these changes in the esophagus. I'm not sure how Nolan's original GI doctor missed it, or why she didn't ever do a follow-up endoscopy and surveillance biopsy, but I suppose the point is moot. The GI team at Golisano's saw it, and that is what matters. His GI care will be in Rochester now, anyway, so the little guy will be appropriately cared for.
The surgery (Nissen Fundoplication with Mic-Key button placement) has been scheduled for March 7 at Golisano Children's Hospital (part of Strong Memorial). The surgeon will do a repeat endoscopy with biopsy prior to the surgery.
If the biopsy shows that his esophageal cells have reverted to normal, then we can rest assured that the Barrett's is gone. If the biopsy shows that the dysplasia remains, then Nolan will be scoped and biopsied every six months for the rest of his life. If a scope shows changes in the pathology of the cells (advancing stages of this pre-cancerous condition), then further action would be taken at that time (I won't go into that now).
I'm still flabbergasted that our original GI doc never did a follow-up scope. I know the condition is very rare, but surveillance is mandatory with dysplasia - the risks are simply too high to ignore.
I'm also kicking myself, because this was one of the very few reports that we did not have a copy of. We still don't have an actual copy of the report - I only remember being told (verbally) that the pathology report showed "ectopic gastric mucosa" and "blunted villi," not having any idea of what those two things meant (and searching the interwebs for useful information with those words was futile).
The good news is that there is now a team in place to follow Nolan and to monitor the histological changes. I can't express how grateful I am that we made the decision to transition to Rochester for Nolan's care. And, hopefully, the new biopsy will show healthy, normal cells that haven't been altered by repeated acid exposure.
There are a few research articles on Barrett's Esophagus in children - I'm posting this here for my own reference:
Barrett's Esophagus
http://www.nature.com/gimo/contents/pt1/full/gimo44.html
Barrett's Esophagus in Children: Diagnosis and Management
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1242875/
Endoscopic Surveillance of Children with Barrett's Esophagus
http://www.hon.ch/OESO/books/Vol_5_Eso_Junction/Articles/art282.html
Barrett's Esophagus in Children: A Study of 31 Children:
http://journals.lww.com/jpgn/Fulltext/2004/06001/P1048_Barrett_s_Esophagus_in_Children__A.1172.aspx
