The Big Day

Tomorrow the twins and I travel to Philadelphia to the Children’s Hospital of Philadelphia (CHOP) again. This time we will see CHOP GI, and I so hope it is better than our last trip to CHOP (Allergy). I have come to learn from many of the other FPIES mommies that CHOP is one of the few places in the entire country with an in depth understanding of FPIES – not to say they understand a whole lot about it – but at least they are interested. In fact CHOP has agreed to a research project initiated by one of the moms. It is a complete mystery that this could be the case and yet the allergist that WE saw had NO CLUE. My hopes and expectations were so high that I cannot really even express how disappointing our appointment was.

We arrived at CHOP 11 out of the 15 minutes early that they request (after getting up at 4am to get to Philadelphia by 7:45)… just me and the twins. Thank goodness for double strollers. There was a fellow who took the kid’s clinical history. When she was done she left the room, presumably consulted with the specialist and they both came back in after about 25 minutes.

The doctor introduced himself, walked across the room, and announced, “This is not an allergy issue – you’re in the wrong place.” He might as well have punched me in the gut. I said something like, “Excuse me?” He went on to tell me why the kid’s DON’T have FPIES at all. He was bold and abrasive and for all intents and purposes he and I ended up in a verbal sparring match. He was telling me all the reasons the diagnosis was incorrect while I rebutted with the facts. I was quoting research papers, scientific studies and even one peer review ; all of which he tried to act like he was familiar with, but obviously was not. He told me that FPIES was only to one food (if you have FPIES to say milk or rice that ONE food is your only trigger). I wish I had thought to ask him why FPIES kids have to carefully trial EACH food if there is only ONE trigger. By his logic it would stand to reason that if you know your one trigger food you could go nuts and eat everything. Oh how I wish that were the case.

The appointment went on for some time with me unable to really speak to him after a while. I certainly could not look him in the eye. I was so disappointed and so angry. I felt like our big chance was wasted on some doctor who clearly did not SPECIALIZE in FPIES. He finally decided he should review the kid’s medical records and call me back in a week or so. He asked me if this was acceptable, but I couldn’t even speak. NO it was not acceptable. All I could think was that I wanted a new doctor and consultation TODAY but I knew that was not the way a hospital or doctor’s office with a full schedule and weeks long waiting list worked. I think he realized that I had no desire to see him again since he offered for a different doctor to follow up with us. He began to apologize for being abrasive, but sorry too little too late. He already wasted $900 worth of “specialized care.”

When the appointment was over I went to the front desk and said, “I don’t know how it works exactly, but I know there is a doctor in charge here and I want to speak to them now.”

Surprisingly they were very accommodating and seemed to not want me to leave dissatisfied. Within less than 10 minutes the head nurse was talking with me in one of the back exam rooms about what had happened. I was by this time crying (not like me in this situation). So Dr. Spergel came in and met with us. By this time the twins were FALLING apart. But he talked with me for just short of an hour. As it turns out he is one of the TWO doctors at CHOP who truly specialize in FPIES.

Even though our chat with Dr. Spergel didn’t take the place of the consult with the other allergist, it was a worthy conversation. After hearing the twin’s history he inadvertently explained why the other doctor was so dismissive. There are certain aspects of the twin’s symptomology that don’t fit with FPIES. Yeah, no kidding, this is what I have been saying for months. To me there is a puzzle here that no one seems to want to solve. Until now that is. Dr. Spergel’s wheels started turning immediately. Although it is not his area of expertise, he thinks there is a co-condition – perhaps a problem metabolizing fructose or another sugar. He talked about this puzzle that we were looking at. FINALLY – someone else sees it. Dr. Spergel assured me that CHOP GI was the right place for the next step in putting the pieces together. Because of the events of our botched allergy appointment Dr. Spergel is taking over the twin’s care. That is a definite blessing in disguise!

We see CHOP GI tomorrow. And so, I am very excited but also nervous. I don’t want to get my hopes up too high.