Standing in a glass box...

The floors of this room- looking out into the vast darkness that our fourteen foot living room window opens up into at 2am- is where I walked, nursed, rocked, walked some more, so many hours with a wide awake, gas and pain filled, often throwing up, baby.   I'm not sure if I can forget the feeling of standing there- looking in the darkness feeling the metaphor it was creating....how I felt like I was standing in a glass box screaming- no one could hear me, and I couldn't escape.  No one knew what was wrong with our little man, and there was nothing I could do to help him. 

March 17, 2010 is when he had his first endoscopy/sigmoidoscopy (and also pH probe).  By the time we got to our GI consult (mid-Feb), we had hope for more definitive tests to tell us what direction to go in, to stop all the crying/gas pains/sleepless nights/food refusal/throwing up.  After all Little Man had fallen from 80th% to 40th% down to the 24th% on the growth chart for weight by the time of our GI consult and, in our eyes, he was spiraling fast. 

Every efforts we had made to control his symptoms failed, and even seemed to be making him worse.  Instead, we were given the recommendation to stop breast feeding immediately, change to Elecare and start a new reflux med (having failed the first one).   These recommendations (unknowing to the doctors, unfortunately unfamiliar with FPIES and the potential triggers in reflux meds and even formula) made him so very sick.  Just 3 doses of the new reflux med and we had a sick little boy who was now refusing to eat altogether.   He ended up being admitted to the hospital the last week of Feb.2010.   There, we got him to begin taking the Elecare, but the vomiting and crying continued.  "Give it time"...3 weeks later, we knew we just had to subject him to the endoscopy, if we had any chance of getting better direction because this road was not working either.   The reflux meds were not working so his continued symptoms were presumed to be from that.  My instincts told me otherwise.  I didn't know why, or what they were telling me- but the blood curtling screams he had while ON the reflux meds were a big clue that his body was not accepting, and probably didn't need, these medications. 

The scope revealed diffuse, non-specific inflammation and lymph nodular hyperplasia.  We received the results from a nurse over the phone.  No doctor needed to speak to us, no follow up was necessary.  That was not ok with me, and I requested a follow up to discuss what this meant- because even after 3weeks of following these recommendations (switch to Elecare, stop all foods)- little man was declining daily, throwing up more daily, and the constipation was more than one infant should ever have to bear.  That follow up appointment left us empty once again...."non specific" inflammation meant...nothing.  Eosinophilic Esophagitis and Celiac Disease had been ruled out by the scopes (other disorders having already been ruled out by labs, stool samples, etc).   We were relieved that it was not one of these, but what was it?  How could no one really know what caused such inflammation in our son's intestines?  No one knew because no one knew/recognized FPIES.   A severe, rare food allergy of the gut. 

That was one year ago.   I am no longer standing alone in a glass box.  The cover has been opened and I am standing on top of it....speaking out for my little man, being his voice every step of the way.   One year ago, doctors did not recognize the chronic condition affecting our infant son; today at least 3more children are being followed by these very same doctors with this very same diagnosis.   Today, doctors not only recognize but treat this diagnosis at this very same clinic where we could not find any answers for our little man.   A lot has changed in a year, and I am grateful.