Tuesday, October 23, 2012

CutiePie with FPIES and EE?!?!

Today was Cutie Pie's 15 month well baby check-up.  I've been on edge for her appointment for at least a week.  I knew walking into the office that they were going to say she hasn't gained enough weight, but even though it wasn't a surprise it was still frustrating.  She weighed in at 20lbs, 4oz which means she's gained a total of 6oz in the last three months.  Not enough.  Her growth chart curve is plummeting and she has gone from the 90th percentile in weight down to like 10th percentile.  Luckily her height and her head are right on the same curve they've always been. 

I think I've said this before, but I love our pediatrician.  He sat and talked to me for a long time about Cutie Pie and her FPIES and the problems we've had getting her to eat.  He is so understanding and honest and tries so hard to be helpful but it was painfully obvious that we are still alone in our fight to figure her out.  He even admitted that he doesn't know a lot about FPIES and doesn't really know what to tell us to help.  However, we did come up with a plan of action of sorts.  First step is that he wants us to be seen by the allergy department at Cincinnati Children's Hospital.  Although their allergy department is notorious for dismissing FPIES, they are the leading hospital in the country for EGID's and our pediatrician thinks some of Cutie Pie's symptoms might benefit from taking a little closer look to at least rule out Eosinophilic Esophagitis (EE).   If the allergy department at Cincy Children's isn't able to help us, he suggested maybe looking into the resources available at either Jewish National Hospital in Denver, CO which has a renown allergy department or possibly Children's Hospital of Philadelphia which is pretty well known in the FPIES community. 

Reflecting on our discussions, I'm full of conflicting feelings.  On one hand I feel relieved to know we at least have a plan and that our pediatrician is on our side and he made it clear he was dedicated to helping us figure Cutie Pie out.  On the other hand, I'm terrified of the possibility of another diagnosis that has no real treatment.  And then there is the prospect of explaining Cutie Pie's history all over again to another set of doctors.  It's exhausting.  I feel bad for having to put her through more tests not to mention all the expensive co-pays and medical bills - and that doesn't even include the possibility of traveling across the country to see yet ANOTHER set of doctors. 

But somehow God always seems to laugh at my frustrations and He calmly reminds me that He is in control of this.  It must be pretty amusing to see what He sees all the time.  Sometimes I wonder what we all look like to Him running around making plans and trying so hard to do our own thing.  I was doing some reading today and here is the verse I came across: 

Luke 12:23  "For life is more than food, and the body more than clothing." 

I get it God.  I'm so blessed to have such a happy, goofy, beautiful little girl in my life. 

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