Thursday, May 9, 2013

Chloe's Appointment at Vanderbilt

Today I took Chloe to the Pediatric GI specialist at Vanderbilt for an appointment. About 4 months ago I started noticing her throwing up in her mouth (yes, it was VERY audbile) and her breath always smelling like vomit. I started questioning her and come to find out, she thought this was completely normal and told me it had been happening since she was 3 years old. I almost choked on my own food at that point. THREE YEARS OLD?!? Are you kidding me? Epic Failure of a mom right here. She has been puking in her mouth and swallowing it or chewing it back up and then swallowing it for three years?!?! Don't get me wrong, I have noticed her chewing on things before but I assumed it was the inside of her cheek or her tongue or something because when I asked her what was in her mouth, she said nothing, and when I checked, there really was nothing there (and now I know it's because she swallowed it back down). Anyways, I took her in to her pediatrician and she put her on Nexium immediately. One month later nothing was better so she doubled the dose (the highest dose she can be on) and even 6 weeks later, we still have little to no improvement. We can still smell her vomit breath daily and hear her puking and swallowing it back down several times/day. Luckily, there is no pain associated with this. She has assured us of that.
At the appointment today, we got some possible answers and found out that Chloe will need an endoscopy. This is where they will put her to sleep in the OR at Vanderbilt Children's Hospital and then slide a camera down her esophagus to look around for strictures, ulcers, herniations, and any other abnormalities, and then they will take a few biopsies. The doctor thinks that Chloe may have Eosinophilic Esophagitis. Here is the best description of it that I could find online to explain it:

From the Mayo Clinic -In eosinophilic esophagitis, a type of white blood cell (eosinophil) builds up in the tube that connects your mouth to your stomach (esophagus) as a reaction to foods, allergens or acid reflux. When that happens, the eosinophils can inflame or injure the esophageal tissue.

If her diagnosis comes back as EE, then she will be set up back at the GI clinic for what is called food allergy patch testing. Here they literally put baby food on her back and cover them spots up with patches (I think there are 25-30 different foods they will test). These will stay on for 3 days and then we will go back to see what she has reacted to. Whatever that test shows, if it shows anything at all, will lead to us being set up with a pediatric nutritionist who can guide us in eliminating the offensive foods from her diet for good. That may be quite the challenge, but we can do it and will deal with it if the time comes.
As for the esophagus, I believe they treat that with steroids and there are some experimental things going on too using a certain type of allergy med in conjunction with the steroids. I'm not sure if it will be a long term thing or not. I would think if she does in fact have EE that they will keep her on the steroids until her esophagus looks better and then her dietary change will sustain the healthy new tissue.

If they find ulcers, hiatel hernia, or any other issues we will go from there with a plan. Hopefully there is no damage from the reflux that has been happening for 3 years (geesh!) or I will REALLY feel guilty then, although the doctor told me that kids think it's totally normal because they have never known different and that she sees it in her patients all the time that are Chloe's age. I guess that made me feel a little better.
 If the endoscopy comes back normal, they will still do the patch test to check her for allergies. I asked if we could start there but she said that insurance won't approve it until a scope has been done and that they needed to check her esophagus anyways since it's been a long term thing and the Nexium isn't working. I tried my best to get out of having to take her in for "surgery" and general anesthesia, but I know it's all in her best interest. 

The test is set for June 28th as that is the earliest they could do it. Until then, we are to continue the Nexium and just wait it out. I will keep everyone updated if anything changes. I'm actually praying they can get her in earlier due to a cancellation but we shall see...

Anyways, after we left the doctor, we shopped and had lunch at Cool Springs Galleria. I kept her out of school for the whole day and made it our date day. 




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