Third times a charm?

Ben and I travelled 1400 miles each way last week for him to see a pediatric GI specialist at Seattle Children's Hospital.  This makes his 3rd different GI since last August, but who's counting?  The flight down was interesting as I had caught the stomach bug going around our house and spent the trip puking my guts out in the middle of the Anchorage terminal, on the plane in a barf bag, and then again in the terminal in Seattle.  If travelling alone with a toddler, I don't recommend doing it with a stomach bug.  Seattle was beautiful--very warm and the hotel was in a great area.  This is fortunate, as we'll be going back.

I wasn't expecting much from the appointment.  I know my friends keep telling me what a great advocate I am for the boys, but I often feel defeated, as if I keep fighting and keeping failing to get them what they need.  All I wanted out of the appointment was a prescription for more Prilosec and a promise to scope Ben to look into the causes of his reflux.  I have been concerned for months about the possibility of Ben having eosinophilic esophagitis and have asked both of his previous ped GIs about whether we should be looking at food allergies, though I never mentioned the disorder I feared he had.

Ben's new GI specialist is Dr. Burpee which cracks me up.  I shared with him Ben's history, and he noted that he was not at all concerned about his size: 32 inches (30th percentile) and 23 pounds (15th percentile).  Dr. Burpee asked me alot of questions, and focuses his concerns on 3 main areas: Ben's difficulty in swallowing food, his excema, and the fact that Ben STILL spits up while on Prilosec.  He said this constellation of symptoms, especially the fact that the solids Ben struggles with the most to swallow are chicken and pasta are symptomatic of eosinophilic esophagitis.  This website (http://www.apfed.org/ee.htm) has more information about the disorder, but it is a serious autoimmune condition that involves multiple food allergies and mimics reflux.

Our course of action is two fold: tripling Ben's Prilosec dosage to 5 mL twice a day (10mL compounded at 2mG per mL) and having an endoscopy to biopsy lesions in January.  For the scope, Ben will go under general anesthesia.  I am praying he doesn't have eosinophilic esophagitis, but am glad he is being scoped so I never have to wonder if there is something more serious going on.