Before I go on, let me explain an elemental diet and why it is used for children with EE. An elemental diet removes all sources of whole or partial proteins. This is done by having the child (or adult) either drink, as in Andrew's case, or ingest by feeding tube an amino acid-based formula, such as Neocate or Elecare. An elemental diet may be considered after a complete elimination diet of positive foods and medications have failed. The goal of the elemental diet is remission, having symptoms resolve and eosinophils clear (at least below 10). At that point, the child would begin food trials, systematically adding back one food/ingredient at a time to determine which foods are causing a reaction.
Now back to Andrew. After his name was finally called they escorted us into the endoscopy room. This was a change for us, because usually he goes to a pre-op room first where he puts on his gown and has a chance to mentally prepare. This is where they usually insert his IV as well. But this time it was immediately to the endo room, where he proceeded to tell the nurse that this time he would like the "shot" after he was asleep. Okay....done! He also informed them that he would please like for them to take off all the tape and sticky pads before he woke up. No problem! They were very nice and accommodating to him. So then they asked me all the usual questions, had me sign all the usual papers, let Daddy and me hold his hand, put on his mask and off to sleep he went. One last kiss and we were off to wait for the results.
An endoscopy doesn't take too long. About 20 minutes later the nurse came to get us. Andrew was a
wake and happy. Much better than after his last scope. Plus, the nurse informed us that she had offered him a Popsicle, and he said, "No, I'm not allowed to eat those." She then offered him the other standard items they are allowed to have when they wake up...juice, sprite, ginger ale...and he again informed her that he wasn't allowed to have any of those items either, but could he please have some water. You can't imagine how proud I was when she told me that. I know he wanted a Popsicle more than anything! What a great kid!
A few minutes later the doctor walked in. I knew before he even said anything that it wasn't good news. He told us that the furrowing (characterized by inflammation and swelling) had pretty much disappeared, which has been evident in each scope Andrew has had since age 3, but his esophagus was covered with white spots. These white spots could be consistent with eosinophils, but it could possibly be a yeast infection. He wanted us to wait to get the biopsy results. He was going to put a rush on the results because he knew that Andrew wanted to start his reintroduction of food as soon as possible. At that time, we thought we would begin regardless of the biopsy results.(The image at the right shows an esophagus with furrowing and clusters of eosinophils.)
Yesterday at 4:00 we got the results. He still has eos in his esophagus. After discussing this with some wonderful moms that have more experience dealing with the challenges of this frustrating disease than I and talking with the doctor, we have decided to keep Andrew on the elemental diet exclusively for at least another 4 weeks. I mean, how can he be one of that 5% that doesn't respond? My friend told me that some of these children just need more time. She has personal experience. Maybe it just wasn't long enough. So, another 4 weeks, here we go.
I was dreading telling Andrew. He was looking so forward to getting to eat his one meat. We had a discussion with him this morning. We explained to him that he wasn't better yet and showed him the pictures of his esophagus. We informed him he would have to stay on his diet for a while longer. No tears, no tantrums, just "okay". How lucky are we to have him as our son?!!
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