Friday, September 30, 2011

Eosinophilic Esophagitis

So, just when you think you have everything all under control...the right medications, the right schedule, the perfect throws you another curve ball.  So, this is our current curve ball...

My views on Asperger's with my son have always been that there wasn't a food related component.  Knowing that so many in the Autism community struggle with this and special diets, I felt relieved to have something that I didn't have to deal with.  Monitoring your own diet can be stressful enough...I can only begin to imagine what managing your child's diet is like when you aren't with them all of the time.  Making sure that school, family and friends comply and that your child doesn't sneak something forbidden when you aren't watching.

My son, who is nine, consistently regurgitates food all day long.  This doesn't bother him at all.  It bothers me.  It smells horrid.  He chews it when it comes up.  I can only imagine what his friends at school think about it.  It has been noticed at school as well.

I didn't think anything major was going on.  My concerns were that it was GERD and the amount of acid that was being brought up into his esophagus.  I was worried about the damage it would cause in the long term.

The pediatrician wrote a prescription for Nexium to reduce the acid.  This didn't stop the regurgitation though.  She referred us to a pediatric gastroenterologist for further evaluation.  After the initial meeting, her thoughts were that it was most likely rumination and not GERD.  Great!  Something I hadn't heard of yet.  Something that I 'googled' as soon as I got home.  Rumination is a behavioral thing.  It is very hard to break, and you work with a behaviorist that is familiar with rumination.  Lucky (sarcasm) for us, both of his therapists aren't familiar with how to treat rumination and the closest behaviorist is forty-five minutes away and has a long waiting list.  Great.  At this point I didn't know whether it would be better to deal with GERD or rumination.

To confirm the diagnosis, he underwent an upper endoscopy.  During this procedure they took biopsies of his esophagus.  He thought it was cool because he got to see images of the inside of his esophagus, stomach and his pyloric sphincter.  I wasn't prepared for what we were told that day after the endoscopy.  It was rumination and GERD.  I left there feeling like I was in a fog.  I wasn't expecting that.

To add to it, a week later I got the results from the biopsies.  Another vocabulary word to add to the list.  I can't spell this one off the top of my head  The biopsies showed that he has eosinophilic esophagitis.  Say what???  I had the doctor repeat it a couple of times, figuring I could figure out how to spell it.  I had to have her spell it out for me.  Great.  Something else to 'google' after we got off the phone.

Apparently, from what the doctor told me, this means that he is having an allergic reaction to something.  It is commonly a food protein, but it could be environmental.  Not sure which one is the 'better' option.  I know for sure that it isn't celiac's disease (gluten) as they did test for that already.  So, he was prescribed medication for this.  Medication that confused our pharmacist.  I won't go into the details, but it involves swallowing liquid that is supposed to be used in a nebulizer and adding splenda to it.  He was also referred to the allergy clinic so we can determine what the allergen is.

So, now we wait for that appointment...I feel helpless because I feel like I am harming him with something he is allergic to that I can't eliminate because I don't know what it is yet.  I hope it isn't dairy because he loves his milk.  Being allergic to the milk protein is not the same as being lactose intolerant either.  I feel so bad, he is only nine.  But, we will find a way to make it through and wait for the next curve ball that life throws our way.


  1. Flovent was the answer for my son with the same condition. Works wonders . No symptoms for a yr since he started and he had problems for yrs. 16 now.

  2. He had the scope and it showed EE as well. Recent scope showed huge improvement! Hope this may help!