Will’s Way, Life with Cornelia deLange Syndrome

Will’s health problems persisted and brought us to Boston Children’s Hospital in early December to see our beloved Dr. Fox, his GI doc.  He ordered an abdominal ultrasound, upper endoscopy and an esophageal dilation.  The ultrasound was normal.  Endoscopy revealed inflammation up and down the length of his esophagus and throughout the stomach area.  Pathology results from biopsy were non-specific inflammation.  No yeast, no infection.  Dr. Fox thinks it was because his Nissen had become so tight which had an impact on the motility of his esophagus.  We doubled him up on his Prilosec to help with the stomach inflammation and hopefully the dilation will help the esophagus.  He continued to be in pain at home so he had a CT  of his pancreas to check for pancreatitis.  So far the results from that were negative.

Fortunately, just a few days before Christmas the pain seemed to suddenly stop and Will has been much better since.   At this point there is no need for round the clock pain medication.  Dr. Fox wants him off of ibuprofen because it is a stomach irritant so we only have Tylenol to use in the pain battle.  The reprieve from pain is so nice to see.  He is such a different person when he is feeling well.

His eating and swallowing is better…although starting to eat enormous amounts again.   This is always troubling.  He gets food obsessive.  Thankfully he doesn’t grow at the rate that he eats.