Wednesday, September 24, 2014

An Update on Harris' Eosinophilic Esophagitis


When Harris was a little younger his doctor said to me, "For a little boy who is so healthy, he sure does have a thick file."

This is a tough post to write, especially as I've been all over the map in my feelings about it.  One minute I'm crying and the next minute I'm determined and confident that we can do this and then the next minute I dissolve back into tears, guilt and fear.  Five years ago, Harris was diagnosed with Eosinophilic Esophagitis, or EE.  It's a food allergy that occurs on the inside of the body and damages the esophagus tissue.  The simplest explanation is that the body recognizes food as the enemy and sends white blood cells (eosinophils) to fight, but those eosinophils due significant damage to the esophageal tissue as they build up.  This is a separate allergy from his tree nut/peanut allergy which is an anaphylactic reaction.

For the past two years, we have been confident that his EE was under control.  His last biopsy showed his eosinophil count at 14, which is just at the point where his doctors's were moderately comfortable (you and I probably have 0 eosinophils in our esophagus).  He has been off of any and all corn for two years since we thought that was the culprit.  Last week, he had a check up endoscopy where his Dr. was very concerned with what he saw.  Harris has significant furrowing, plaque and striations on his esophagus.  The long term concern is that this tissue will scar which will then make eating and swallowing permanently more difficult (that's how we first became aware of an issue- food gets stuck!).

Once we got the numbers back of eosinophils present, the doctors were very concerned as he is currently at 65; which is really high and really not good.  Therefore, he will immediately go to a dairy, corn, gluten, and nut free diet.  Which is hard.  Doable, but hard.

From here we will stay with this elimination diet and then re-scope in 2 to 3 months.  Also, we will immediately see his allergist and most likely start from scratch.  Literally, we will probably start all over with the 3 day allergy scratch test.  I'll be sure to post how those appointments go.

There are several things that I feel so blessed about when it comes to Harris' condition.  First, we believe that this is manageable.  We thank God we aren't fighting something much bigger here and I'm working hard to keep it in perspective.  Secondly, we have the means to be able to feed Harris on such a specialized diet.  Gluten free bread, crackers, etc. are ridiculously expensive and I'm so thankful that we are able to shop for those items.  Also, as a stay at home Mom I have the time to meal plan and to make the specialized food for him as most processed food is off the table for now.

Most of all I feel so blessed that Harris is so amazingly good about these diet restrictions.  There were some tears as he realized that some of his favorite foods were going to be gone but all in all he's been really wonderful and made it easier than it could be.  After seeing Harris' esophagus his Doctor couldn't believe that Harris didn't complain every single day and I'm so thankful that Harris is mostly a happy, healthy child!  Even if his file is too thick for our liking.


6 comments:

  1. Oh Anna! I'm so sorry to hear about this. That must be so frustrating for all of you. Poor little guy! Sending hugs to you and Harris.
    Let's catch up soon. We can share gluten free recipes. ;)
    XOXO Jen

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    1. Yes! I don't yet have any good ones to share but I sure would love yours!

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  2. Thanks for keeping us updated. Big love and prayers to Harris!

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  3. I am so sorry to hear this. :( I hope with the elimination diet the numbers improve! We dabble with a Paleo diet (gluten,corn, soy,dairy free) so you will probably see recipes pop up on my pinterest. I have some very good ones that were pretty easy and affordable.

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  4. Sorry. I had trouble responding to this post earlier. It cut to the quick. My heart was in my mouth. So far away, I can only pray. You are all brave souls.

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  5. It might be easy to assume that you have chronic GERD or acid reflux, but it might also be just a symptom of something else. That “something else” could be EoE – or eosinophilic esophagitis. Some of the symptoms (apart from GERD and acid reflux) include difficulty swallowing, chest pains, persistent heartburns, backflow of food that you weren’t able to digest. If these are all too familiar, check with your physician to see of you indeed have EoE! Click here for more details

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