So, we got Mateo's endoscopy/biopsy results back. Here is the email I got via Mychart from his gastroenterologist, Dr. Annie Terry.
Mateo's biopsies confirm that he has eosinophilic ( allergic) esophagitis. This problem is caused by a reaction to foods.Kids with this problem have reactions to foods that may only show up as inflammation in the esophagus. Some have symptoms that look like acid reflux.
Unfortunately, for many kids with this problem, the normal blood and skin tests for allergies are negative, making it difficult to find the food or foods that are the cause of the problem. In his case, I wonder whether it is the milk protein in his Pediasure Sidekicks. The treatment for this problem is to either eliminate the foods from the diet that are causing the problem or give a steroid medication by mouth to coat the esophagus. Many centers start by eliminating the 6 most common foods that cause these allergies-- milk, soy, egg, wheat, peanut, fish.
Since his bleeding problem seemed to start soon after adding the Pediasure, one option for Mateo would be to just remove dairy from his diet ( pediasure, milk, cheese, ice cream, yogurt) and let him drink regular Neocate again. I would suggest that we schedule another endoscopy in 6 weeks to see whether removing only dairy from his diet is enough to treat this problem.
When I spoke to Dr Terry over the phone, she told me that this is a huge problem with kids with Short Bowel Syndrome, and Mateo's allergy is a good one, whatever it may be. She said they would normally see 15 cells in a slide, they saw over 100 in the areas on the bottom of the esophagus on Mateo's biopsy. She told me that we are still years away from an accurate test that would confirm if we had removed the right food(s) from his diet, so all we can do is a blood allergy test( which above she stated usually comes back negative), and start removing foods one by one. She is scheduling the blood tests and Doernbecher scheduling will be calling me to set up another endoscopy for 6 weeks out, to check and see if the esophagus looks any better.
I'm sensing a very long, stressful, frustrating road ahead...