July 1 at 3:30 p.m. was our next 'big appointment.' We were heading to Comer Children' Hospital at the University of Chicago. Once again, the waiting list to get in was long and, once again, Wonder Woman fought to get us in sooner. Furthermore, she had actually gotten to talk to a doctor there who assured her that their staff was familiar with FPIES. As a matter of fact, there was a doctor there who was very interested in allergies and food intolerances who would be great for us to see. He had JUST diagnosed another case recently. Hooray! Once again, I was incredibly hopeful. Can you guess where this is heading?
We filled out the paperwork, didn't wait long, were incredibly impressed by the facility itself, and were charmed by the nurse who took all Ginny's vitals and gave Ellie loads of Disney Fairy stickers just for being the big sister. After the nurse, we saw a resident who took a medical history (very thorough) and... Enter the doctor. We talked at length. He gave Ginny an exam. And... it's time for a tangent.
Tangent: The week prior to this visit we were in Florida on vacation. We arrived on a Saturday and couldn't wait to get to the beach. We had just read the report on sunscreens from the Environmental Working Group (thanks Laura!) and had bought expensive, all natural, very effective sunscreen. So effective, it turns out, that it kept all the sun out - and all the heat in. By Sunday night Ginny was covered in heat rash (we think) and by Monday morning we were heading to a walk-in clinic just to be sure it wasn't anything more serious. (Oh yeah, we were great company for the friends we were vacationing with!) We never got a definitive answer on the rash - and it stuck with G, even when we went home. As a matter of fact, it not only stuck, but took on a life of it's own. Each day following vacation the rash metamorphosed into a new version of itself - raised and bumpy, smooth and splotchy, hot, raw, red patches and little red pin pricks swarmed G's trunk, neck and, sometimes, arms and legs. Ellie had a million rashes and, eventually, we just gave up on getting them diagnosed (excepting ones that involved other symptoms) so, to be honest, since Ginny's demeanor wasn't any different than usual and the rash didn't seem to bother her, we ignored it.
So the doctor examined her and, I think, got a bit side tracked by the rash. If I remember correctly, that day it was a sight to behold. Like the last doctor we saw, he was very nice and seemed very intelligent. He, like Wonder Woman, agreed that Hirshprung's and IND weren't possibilities because G lacked almost all the symptoms. He then confidently declared... that Ginny had a dairy allergy. Umm... I guess this is a possibility but I was a little surprised. Wasn't he even going to mention FPIES? He directed me to remove all dairy and eggs from my diet (these are the big offenders for many kids with allergies), see an allergist ASAP and then come back to see him in 6-8 weeks. What about the vomiting? He said that some allergies are so bad they might induce vomiting. That was news to me. It might not be a fair response, but I felt as if he had just said, "Take an aspirin and call me in the morning." Yeah, you know what I did. I asked, "We thought she might have FPIES?" He didn't understand what I said. I spelled it out. He said, "Well, that really has to do with how you process sugars and I don't see any signs of that in her and FPIES is so rare that we probably only have 1 or 2 kids with that in our practice of about 3500 patients and blahblitty blah blah blah..." Huh? FPIES is all about processing proteins.
So our appointment ended. Maybe I should have said more? He was supposed to be very knowledgeable about FPIES. My chest felt tight and my mind was racing. Had I misunderstood FPIES? Did it have to do with processing sugars? I'm not a doctor, so it was a possibility, I guess. Both kids had missed out on afternoon naps and were falling apart. We had arrived at 3:30 and were leaving at 7 and John and I were in seperate cars because he had come from work. We loaded crying children into my car and drove home. We were in the house less than five minutes when the phone rang. Kids were still crying and we were trying to put together a quick meal. I almost didn't pick it up. When I did answer I was shocked to hear the doctor we had just met with on the other end. I thought quickly that he might be calling to clarify his suggestions about alterations to my diet. Nope. He was just calling to clarify. He had used the word allergy, but "Allergy is such a broad spectrum term." Huh? I believe he said something like, "I didn't understand what you were saying, so said allergy, but I think she has what you said." What you said? "You think she has FPIES?" Yes. He did. My throat closed up so quickly and I was so mad, sad, frustrated and stunned that just remembering it brings tears to my eyes now. He reiterated that he still wanted me to ditch the dairy and eggs, see an allergist and return to see him in 6-8 weeks. When I hung up, I erupted.
Here's the thing. I don't intend to call out doctors by name in my blog. I'm not blogging to rip on doctors or nurses or hospitals and I believe that we saw very intelligent people from day one of this mess. I do. And I know that FPIES is not common but I also know this: "I don't know" is an acceptable answer. Throughout my, relatively, short life I have learned that admitting that I don't know something leads me to great opportunities to learn more. I believe that this doctor hadn't heard of FPIES. I believe that when we left he looked it up, agreed with my diagnosis and called to tell me so. I remember him as a very kind individual who was sweet with both of my children and seemed to be a great teacher to the resident who was with him throughout our appointment, but just thinking back on how it all ended still makes me cry.
So, did we have a diagnosis? I don't know. Can you call that a diagnosis? I had found a great networking site for FPIES families online and learned that many of them didn't get 'official' diagnosis for quite some time. We decided to give up looking for a G.I., take this doctor's suggestions for my diet, and move on to see an allergist first.
Huh? An allergist? I thought you warned me not to think allergy? What the heck? Did you lie? Is this whole, really, really, really long blog a lie? No, it's not. Yes, I did warn you not to confuse FPIES with allergies, but here's where it gets murkier. G could also have lots of regular allergies. When we do food trials (for 'minor' foods at home) we need to make sure G is 100% and not reacting to foods for any other reasons (not that an allergy would make her vomit, but don't forget that FPIES kids can have lesser reactions too) to determine if she 'passes' or 'fails' each food. Furthermore, if G did have regular allergies, she was getting those via my breast milk and it would be good for me to cut out those foods to help her feel better every day. So, we decided to check this task off our list. Finally, if we could find an allergist familiar with FPIES (fingers crossed!), perhaps he or she would be familiar with the promising patch testing trials I mentioned earlier (see the link if you want more info now and don't want to wait until I blog about it later).
Of course, we recapped all the latest news with Wonder Woman and she took on the task of finding us an FPIES aware allergist ASAP. Yes, I'm sure you're sick of hearing about it, but her proactive work and frustration on our behalf was and continues to be so important. It's so easy to get lost in all this but having a doctor as your advocate truly makes a difference.
It was my intention at the time - and remains so now - to not return to that doctor. I might email him though to clarify. But first, an allergist. I bet you always wanted to hear about a visit to the allergist, right? Yeah... I knew you'd all become my faithful readers!
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