Andrew Update: Biopsy and Ph Probe Results

We received Andrew's results from his endoscopy/biopsy and ph probe  a couple of weeks ago, but  things have been crazy so I haven't had a chance to post the results.  Let me start by giving a brief review of his treatment history to this point.  When he was diagnosed at age 3 he was put on a high dose of systemic steroids which did not help.  Over the next few years he was on and off swallowed steroids with no success as well.  At that time we changed GI's and he had him patch tested.  He started an elimination diet of 5 foods and his Eos count went up.  He was then patch tested again at a different clinic, was taken off 13 foods, and again his Eos count went up.  At that point we put him on an elemental only diet (Neocate Splash) for 8 weeks.  When he was scoped after those 8 weeks there were so many eos phf they couldn't count them.  So then we decided to try a round of high dose steroids while he was also on the elemental diet.  So now for the results....

The endoscopy showed that there is still furrowing and irritation, but no visible "white patches".  The biopsy results showed that he is in histologic remission (5 eos/phf, the first time he has ever been in remission).  The Ph probe showed that he has excessive reflux which is all acidic, apparently the cause of irritation in the esophagus.  So what about the treatment?  Our doctor explained to us the importance of getting Andrew's reflux under control first.  So he will be going from 20 mg of prilosec 1x/day to 40mg 2x/day.  Pretty big jump.  Next we need to taper him off the high dose steroids.  This process takes 4 weeks.  After he is weaned off the steroids, we will see if he can maintain remission off the steroids, but still on the elemental only diet for at least 3 weeks.  The doctor that our GI is consulting with suggests that we have Andrew scoped again after this period to see if he has maintained remission.  Our GI feels that we could go on symptoms, and if he doesn't have any symptoms after the 3 weeks, we could then begin to trial a food.  So that is the treatment plan.

Our dilemma:  To scope or not to scope.  Each time Andrew is scoped there is risk involved.  Anesthesia poses a risk, not to mention the process of an endoscopy itself.  Each time I watch my child go to sleep my heart drops to my stomach and I say a little prayer for my son and the doctors.  Each morning of his procedures my stomach is upset. I hate (even though that's a word I tell my kids not to use), but yes, I hate for Andrew to have to have procedures of any kind.  I don't want him to have a scope if he doesn't need to.  I respect our GI for not wanting to put Andrew through any unnecessary medical procedures.  He is not thinking about his pocketbook, but of my child.  However, with that said, what happens if we don't scope him.  When he was on formula alone he was basically symptom free, but still had excessive eos.  What if he is symptom free and we don't scope him and start food trials and he fails his food trials.  Will we really know if it is the food or if he really stayed in remission after he was tapered off the steroids?  So as much as I hate to have him scoped, I'm thinking it may be the best thing to do to be sure we have all of the answers before we start food trials.  Why can't anything with this disease be easy?  I just have to remind myself each day that I am so lucky that Andrew is my child and that he is so wonderful when it comes to his EE.  How many 8 year old children would drink this awful stuff for 6 months and never complain?  What a blessing he is!

I would love your input and thoughts about scoping, please feel free to leave a comment.