Thursday, July 29, 2010

A Tale of Three Doctors, Part 3 (of 3!)

First, let me encourage all of my faithful readers... You're close! You're sooooo close to being caught up to present day in our saga and then, I promise, my posts will get shorter. I think. I mean, why wouldn't they? And, after all, no one is forcing you to read this. Seriously, only five of you are even officially blog 'followers' so it's not even like I'm crowding your inbox. Jeez. Really.

Anyhow... I'm not going to recap this time, I'm going to jump right in. We were heading to an allergist. How did we find one? How did we get in so fast? By now, you should know the answer. Yup, Wonder Woman did it again. We should send her and her staff a Christmas gift or chocolates or maybe magic lassos. Didn’t Wonder Woman have a magic lasso? Don’t think we can afford to give away invisible planes….

Monday, July 26, 2010

A Tale of Three Doctors, Part 2

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.

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...

Saturday, July 24, 2010

Come on already! Just spit it out. What is FPIES?

For your reading pleasure, I have spent all sorts of time linking the best FPIES info I could find online to this blog so, for the most detailed, medical, official information on FPIES, read those. For those of you not obsessed with my kiddo's medical condition (dreaming about it at night, researching non -stop, bothering doctors via phone and email... wait, that's just me), here's the down and dirty.

FPIES stands for Food Protein Induced Entercolitis Syndrome. (I know that means nothing to you. Not long ago it meant nothing to me either.) FPIES is on the furthest end of the food intolerance spectrum. Some people are lactose intolerant. These people can't digest dairy products because they lack umm.... well, they lack something enabling them to break down and digest dairy. I'm not lactose intolerant so I don't know what it is, but doctors do. Other people live gluten free because they also lack something that doctors could tell you all about which enables them to break down and digest gluten. If these people eat the foods they shouldn't, my understanding is that they feel pretty miserable: gas, reflux, cramps, rashes, diarrhea and/or blood in their stool (I don't think I'll ever post without mentioning poop or vomit).

FPIES is kinda like those things but, instead of FPIES kids reacting to dairy or wheat or soy, they react to proteins. Protein is pretty much in everything we eat. When an FPIES kid eats food they shouldn't they might have some or all of the above reactions but, in addition, their body tends to reject the food. Sustained, violent, projectile vomiting. (There is a very graphic link to a YouTube video of a little boy having an FPIES reaction if you REALLY feel the need to see this). Some kids, like Ginny, vomit until they're in shock. Unlike the other food intolerances (spell check doesn't think that 'intolerances' is a word, by the way), doctors can't tell you all about why this happens. There is shockingly little information available, appallingly little awareness in the medical community and endless conflicting opinions on every aspect of this beast. As a matter of fact, the only way to diagnose FPIES is by observing reactions (and going through the tests to rule out other conditions). Fun fun fun. But there is one good thing, one VERY GOOD THING about FPIES and it is this... Kids grow out of it. It might take 3 or 4 or 6 years, but they do grow out of it.

Friday, July 23, 2010

Once Upon a Time: How it All Began

The beginning is the best place to start so here it is, from the very beginning. This post is going to be long partly because there is a lot of ground to cover to catch you all up to present day, and partly because I ramble. And just a warning, I’m going to talk about vomit, constipation and poop so you may want to put down your snack before continuing on.

It was a sunny day in May (honestly, I don’t remember if it was sunny but hey, why not?) and G was nearing 6 months. She was cute, growing strong and healthy and..and… I’d like to go on an on with adjectives about how sweet she was but I’d be lying. She didn’t sleep at night. She never cried, she screamed. And when did she scream you might ask? Every time I set her down. No, I’m not kidding. I love my kiddo but honesty is the best policy and the truth is, she wasn’t easy.

Thursday, July 22, 2010

First, a Disclaimer

So now I'm blogging. Bloggety blog blog blog. But before I really get going, some disclaimers:
  • I make no claims of professionalism or perfect grammar. I know of at least two friends whose fingers will be itching to grab their red correction pens as they read this. Yes Nidhi and Courtney, I mean you. I use too many commas and I use them in the wrong places. I use '...' and '-' all the time in inappropriate places and don't plan to stop doing it anytime soon.
  • I think I'm funny. If you don't, stop reading. Now. Hmm... I see you're still reading....
  • I am not speaking for anyone else. Not even John. I didn't even tell him I intended to blog until after I posted this. Oops.
  • I'm blogging for two reasons: First, so I don't have to call a million people and update them regularly on Ginny's status. Yes, I mean you. No, it doesn't mean I don't love you or that we won't talk on the phone anymore. Really. Take a deep breath and get over it. Wow, doesn't it feel better to let go of that anxiety? Second, I'm blogging just in case our story and the info posted here will help other parents struggling through this with their little ones. The waters of FPIES are murky, hard to navigate and incredibly frustrating. I have relied heavily on other parents for FPIES info and this is a way to start paying it forward.
  • I intend to ramble, ruminate and make fun of all sorts of people, places and things.
  • I won't mention anyone by name except the members of my own immediate family (and the two women noted in the first bullet point. Oops.). I don't intend to talk about you anyway so don't worry.
  • Our FPIES journey began in May 2010. Today is July 22, 2010. There is a lot of history to share. I plan to post our story chronologically as time allows, and will eventually get this all up to date. Hold your horses. I'm sure I'll keep you on the edge of your seat!
  • I am not a medical expert. FPIES isn't fully understood by the professionals, much less by me. If you're looking for FPIES information, I hope that our story is helpful only by comparison.

Just felt I should let you know.