Crazy Rants of a VACTERL Dad

So in addition to VACTERL, my son has to deal with Eosinophilic Esophagitis.  It sounds like the Latin mass to me.  You can Google it if you want the gory details.  Bottom line it is corrosive scum in his upper digestion track (it looks a bit like frost).  A year and a half ago, he had to go on a formula only diet to clear it up.  Then we reintroduced one food at a time.  We thought it was behind us.  His last endoscopy was clean as a whistle (more or less).

So this week he had a six month(ish) follow up endoscopy.  It was suppose to be routine.  Yeah, well nothing is routine.  I know where winter went…it is in my kids gut.

I am grumbling today.  To quote the great poet Hamburgler, “rubble rubble.”


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By Ben Posted in Life

3 comments on “

  1. So what did you have to keep out of his diet. I have heard that grains (esp wheat can irritate many at a subclinical level) and dairy for others. Curious what your results were.

  2. Long story…we tried for a couple of years to remove one food at a time, all to no avail. So they put him on a strict diet of hypoallergenic formula for 3 and a half months. They did a endoscopy and he was nearly clean. So we introduced one food at a time, roughly one a month. He was finally back to a normal diet. But that was a couple of months ago.

    We have not got the new plan yet. But I would assume we will take foods away in reverse order and do monthly endoscopies.

    I was really bummed earlier this week. But I have had a chance to dust myself off since then. This too shall pass.

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