Eosinophilic Esophagitis

So, just when you think you have everything all under control...the right medications, the right schedule, the perfect balance...life 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 yet...lol.  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.

My Overactive Sniffer

I have always had a keen sense of smell.  Usually, this isn't a positive thing as many smells bother me.  A few times, though, it has come in handy.  I'd like to take you back to a moment from my childhood when my overactive sniffer was a blessing.

Growing up, I was basically the only kid in my extended family as all of the others lived far away.  It was me and a half dozen adults, give or take.  In many ways this was a positive thing.  This also was a negative thing.  I was just a 'kid' and hadn't been around long enough to know more than anyone else around me.

One day, at my aunt's house, I could smell something burning.  It smelled like a wood stove, only there wasn't a wood stove.  I went and told the adults, but since I was no more than ten and no one else could smell anything, my concerns were dismissed.  After a few more minutes of smelling what was definitively wood smoke, I went to tell them again.  I didn't let them dismiss my concerns this time.

They still couldn't smell what I could smell.  I led them to where I could smell it the strongest.  This was the room we call the 'Den'.  They couldn't smell it there either.  Boy was I getting aggravated.

Someone, I don't remember who, finally found the source.  Outside the door of the den, which leads to the outside, the outside light had fallen over and was burning a hole into the wood on the house.  Luckily, there wasn't any major damage, but I attribute that to early detection.  All that needed to be replaced was the light and the wood that had been burning.  If it wasn't for my nose, it could have been a lot worse.  I am also thankful that my concerns were listened to.

Now, only if my nose could always be a good thing.  There are many smells that I can not tolerate.  Flowery fragrances are horrible.  It may seem strange, but the smell of skunk doesn't bother me.  The smell of microwave popcorn...can't tolerate that one either.  I wish I knew why my nose likes certain smells and detests others.  I also wish I knew what the average sniffer was like.