Wednesday, August 25, 2010

No spinach today.... just a rant

Ginny has a cold. She also has a low grade fever. I don't think it's FPIES related, by the way, just a summer cold or teething or (let's hope not but...) even an ear infection coming on. But, she has a cold so she has little interest in eating anything. Not even pears this morning. Sigh....

Bad for Ginny, good for me. Why? It gives me a break from writing about Ginny's eating to go on a good 'ol fashioned rant. That's right. Have a seat, sit back, grab a drink (I like coffee and Bailey's - but it's a bit early in the day for that) and listen to me rant about doctors and hospitals and medical politics....

I'm feeling a little alone with FPIES. I have loads of online support and we love Wonder Woman and Boy Wonder is alright but still... an expert or veteran, in person, would rock. John thinks we don't need one. I disagree. I want advice or input I can really lean on, ya know? Something with solid credentials behind it so I don't feel like I'm losing my mind. Someone to answer questions and reassure us and maybe even tell us those things that we don't even know that we don't know. (Read it again, it will make sense eventually.) So I've been searching and searching and searching and, unfortunately, striking out.

At the urging of some online FPIES moms and other friends I decided to re-contact an institution we visited previously. I won't name them here. I called there to see if we might see another Pediatric GI in the department; one familiar with FPIES since the doc we did see there had never heard of it. The call went like this: I explained our history at this institution to the nurse who answered the phone; told her that my daughter has an unusual condition and that we were hoping to see a different doctor there, if there was one familiar with my daughter's condition. She explained that there is a massively long, paperwork filled, process one must go through in order to switch doctors because this institution believes strongly that a continuum of care is best for the patient. I replied that I would be more than happy to complete the process and all involved paperwork, but first wanted to be sure there even is a doctor there familiar with my daughter's condition. Her very snotty response? "We're blah-blitty-blah-blah Hospital. We've pretty much seen everything. What does she have?" "FPIES," I responded. A long, silent pause on her end had me continuing, "Food Protein Induced Entercolitis Syndrome." There was another long pause on her end before she continued in her oh-so-pleasant tone, "I've never heard of that. So who diagnosed that for you." I named the institution and doctor who did. She seemed to be doubting me and was shocked with my quick answers, especially this one because her tone changed completely. "Oh, he used to work here. Let me write down the name of that syndrome again and I'll get back to you to let you know which doctor you might see." Although I was really irritated with this woman personally, I was hopeful at this point that we might, after loads of paperwork, get to see someone else there.

I got a call back the next day, from the RN Supervisor of the department. She sounded apologetic from the moment she began to talk. She explained that we would not be allowed to see a different doctor there. She explained that the doc we saw is familiar with diseases that have similar patient care so we would not be allowed to switch. I asked if they have doctors who are familiar with FPIES. The incredible answer? Yes! She admitted that they don't have experts there, but do have two docs who have seen and worked with FPIES patients in the past. I clarified, "So you have doctors familiar with FPIES but we won't be allowed to see them?" Her sad reply gave no real answer, "I understand if you want to keep looking elsewhere so you can see a doctor familiar with your daughter's condition."

SERIOUSLY? I could just SCREAM. This happened weeks ago and remembering it is still infuriating. Worse yet is that two other FPIES moms (read their blogs if you don't believe me) are currently encountering the same ridiculous kinds of roadblocks at different MAJOR hospitals. I'm so angry. I don't understand why it is so hard to find someone to help us keep our kid healthy. It seems amazing that hospital politics can get in the way of good care. Makes me mad. Makes me sad. Makes me understand more every day how important it is that Ginny has me as her determined advocate. I won't be quiet. I won't stop searching. I will keep learning. I will keep fighting. Grrrrrr......


  1. This comment has been removed by the author.

  2. I have chills and could cry all at the same moment!! Thank you!!!!!! Thank you for making me feel a little less alone in this search to find support from the medical community. Your way with words is comforting on so many levels. Thank you. I said it on my blog as well...I just don't understand why my child with a chronic illness deserves so much less care than any other child with a chronic illness.

    Can I get an FPIES cheer?