Monday, March 19, 2012

When will he get better?

Variations on this are probably the second most often asked questions (right after "Uh, so, what's wrong with him anyway?").  Will he ever get better?  When??  He'll outgrow this, right? Oh, is that all still going on?

The thing is, EGIDs are still "new" disorders.  They began to be diagnosed (sparingly) in the 1980's.  The incidence has increased rapidly since then, but it's still relatively rare and the long-term data just isn't there.  Further complicating things is the fact that what little research that is being done, is being done on Eosinophilic Esophagitis.  Not that this is a bad thing - it's the most common of the very rare EGIDs - but it's only part of the puzzle for Aidan, since his colon is affected as well (and is actually generally in worse shape than his esophagus.).

There have been several studies done to try to analyze the limited data that is available, and what seems clear from my "research" (Googling is research.  Shut up.) is that few patients have shown complete resolution of the disease.  Most patients show that the disease persists, but that some triggers may be outgrown.

The important piece to note is that there are no studies showing that EGIDs limit life expectancy.  Furthermore, although this is a frequent worry of many EGID parents, no good link exists between EGIDs and cancer of the esophagus.

There are some complications of EoE that we are aware of and will look out for.  EoE patients can develop strictures (narrowing of the esophagus), making swallowing difficult and often leading to food impaction.  There's not much information out there about complications of EC, but Aidan has a fantastic team of doctors working tirelessly to keep him well.

Soooo, to answer your questions:  Yes, he will get better.  If I told you when, I'd be making it up.  No, he probably won't outgrow this.  And yes, I'm sorry to say, this is still going on. 

What does all of this mean to us?

We anticipate that Aidan will develop a list of safe foods, and that it will grow over time after we get some successful food trials under our belt.  Food trials are a long, slow process, so please don't be shocked when you ask and we tell you that he's still not eating.

We are confident that Aidan will figure out what's going to be normal for him, and he'll lead a long, happy, non-food-centered life.

Don't you worry about me...  I'm going to be just fine :)


  1. Eeep! I'm so excited for our first pass, you know, whenever it happens.

  2. Great idea for the blog, love you guys!!