The Opposite of Helpful

It's my own fault for placing today's visit to Riley Children's Hospital on an unattainable pedestal. I'm also to blame for pinning Dr. Leickly as an allergy god that could solve all of our problems through divine intervention. I went into today's appointment with unrealistic hopes and optimism and I left utterly crushed. Apparently, our FPIES is so rare that acclaimed doctors at prestigious Children's Hospitals don't even know what F-P-I-E-S stands for and laugh when I say it out loud.

The fresh load of snow and disagreeable roads could have foreshadowed the experience we were in for. At the doctor's office, I rattled off our entire story to a medical student and then waited to see the doctor. When Dr. Leickly finally walked into the room, he looked perplexed and talked loudly about the complexity of Claire's case. He also told us that he doesn't even deal with kids with proctitus. If he'd have told us right then and there that we were in the wrong place, he would have saved us all a couple of hours of our lives... But he didn't. Instead, he shot down pretty much everything we said as "infeasible" or "rare". But it IS feasible and it IS rare... So now what??

Even though we provided him with a stack of medical records half-an-inch thick weeks ago, it quickly became clear that the records hadn't seen the light of day. Fortunately, I brought along my binder of research and produced a study on FPIES from the Journal of Pediatric Medicine. That Journal fueled the remainder of our consult with him... As in, he looked at the data page and called out information we're already pretty well versed in. I'm contemplating billing him for my time...

He then suggested we do yet another skin prick test just to be sure Claire doesn't have a Type 1 allergy to milk, rice, oats and sweet potato. I told him that I was confident the tests would all be negative, but I went along with it just to prove my point. As predicted, Claire's only reaction was to the histamine control. Even after we went through all of that, he wouldn't confirm our FPIES diagnosis. He advised us against feeding her the foods that she's reacted to in the past and assured us that any additional "triggers" are highly unlikely...Oh yeah, and to check out his website (???).

There are a couple of GOOD things came from today's visit. First, I have a phone number for a dietician. Second, I have a renewed appreciation for Dr. Hubbard, his knowledge, his support and his bedside manner. Third, Claire is tipping the scales at 17 pounds (75th percentile!!) and from here on out we're finished with non-nutritive middle-of-the-night feedings! Last, we're going to work through our FPIES grass-roots style. The rareness of this disease means that there aren't FPIES specialists at our fingertips. Assembling Team Claire is going to require reaching out and screening allergists, gastroneurologists and dieticians long before we ever step foot in their office. As much as I'd love to educate the medical world on FPIES, I have my daughter to worry about first.

This day is turning out to be a dumpster fire. Maybe some avocados will help :)