Sunday, July 25, 2010

And Now, Back to the Story: A Tale of Three Doctors, Part 1

So, back to the story.... A recap? Okay, I'll recap.... one incredibly fussy kid, 2 ER visits, lots of vomit, no answers, googled 'baby vomits rice cereal,' discovered FPIES and Wonder Woman agrees, got it?

Next, we started the search for more doctors. More doctors you say? Yes! Wonder Woman agreed with me that Ginny has FPIES, but also admitted that she'd never heard of FPIES before so, obviously, wasn't an expert. FPIES is not common. We needed experts. First, we needed a Pediatric G.I. We wanted someone to confirm this diagnosis (or even disagree with us while giving us a different answer). In addition to confirmation, we needed someone who knew enough about FPIES to be willing and able to give us a letter directing treatment should we end up in the ER again. (The thing is, when you go to the ER you sign a letter giving doctors 'consent to treat.' It's not carte blanche to do whatever they want, however, when a kid comes in looking like Ginny did, they're always going to want to X-ray her first and follow a certain path of diagnosis and what we'll really want is treatment ASAP- simply an IV and, depending on Ginny's condition, Zofran. Besides, if Ginny kept getting X-rayed this regularly she was bound to start glowing). Finally, should we run into any of the other issues that FPIES kids encounter, we wanted a G.I. familiar with her case to help treat her. So, first we started to search for a G.I...

Although I wasn't thrilled with how things went during our ER visits to Children's we returned there to see a specialist. Although the doctors in the ER might not be familiar with FPIES, certainly a pediatric G.I. at a MAJOR Children's hospital in a big city would be, right? Initially, we got an appointment that was months away. Wonder Woman decided that this was not acceptable, called and told them so, and got us in sooner. Isn't she the coolest?

June 18 - 7:45 a.m. We arrived at the outpatient center at Children's. Enter the doctor. She asked all sorts of questions that no one else had asked and then gave Genevieve an exam. I was utterly convinced that, from this information, she would glean an answer. Hooray! An answer! Now, I have to admit that this is a bit graphic and Ginny will absolutely HATE me for it someday but I need to tell you that part of the exam included a quick finger up the pooper. When the doc did this, her face lit up. She had an answer. Ginny had gas in the last section of her bowel that she hadn't released. This is, apparently, very significant. She suspected that Ginny has either Hirschsprung's disease or Intestinal Neuronal Dysplasia. The former would mean that one section of Ginny's bowel is missing nerves that allow it to function correctly and the latter means that all of her intestines are missing those nerves. I guess it could have been a possibility but here's the catch - The most prominent feature of both of these disorders? Chronic constipation. Seriously? Remember what I mentioned in an earlier post? Ginny was (and still is) a prolific pooper. Seriously, it's pretty incredible. I didn't want to argue with the doctor then and there, but it just didn't seem right. She wanted to send us down to X-ray immediately to confirm that Ginny still had unusual air fluid levels (indicating blockage), and then have us set up an appointment with a surgeon for a rectal biopsy to confirm her diagnosis.

Like I said, I didn't want to argue with the doctor then and there - I really didn't- but I had to ask. "We thought she might have FPIES. Do you think she could have FPIES?" She had never heard of it. I had come prepared and so handed over printouts of my research. To her credit, she spent a few minutes scanning the info and then, handing it back to me said, "No, I don't think she has this. I will talk to my colleagues if you'd like, but I don't think she has this." Not that I wanted to be right, but her answer didn't seem like a possibility at all. Ginny wasn't constipated and neither diagnosis she suggested accounted for the vomiting. I was deflated. We headed down for the X-ray, which was quick and painless (except for the radiation, right?), and headed home. The call came later that day. "I talked to my two colleagues and we don't think she has FPIES."

I talked to Wonder Woman shortly after receiving the call and she was baffled. We agreed that since none of Ginny's symptoms pointed to either Hirschprung's or IND, we wouldn't go forward with the biopsy. Just thinking about all of this again completely brings back the feeling of disappointment we had. Still no answers. Still no 'official' diagnosis of anything. Still walking on eggshells. Still no one to give us direction. Sigh... But Wonder Woman wasn't taking this sitting down. If we weren't going to find the right person at Children's, we would head to Comer Children's Hospital at the University of Chicago. She would start making calls right away. Remember how she admitted she hadn't heard of FPIES? Well, by this point in time she has, solely on our behalf, become a sort of minor 'expert' and she's in our corner. Damn we're lucky.

1 comment:

  1. Reading your blog--be sure to facebook update for us!