EoE Saga Update
The past few days have been incredibly frustrating in our EoE saga. Maya has been refluxing like crazy, even with her EoE medication and Nexium and elimination diet. Makes me wonder what the point of the medication is when stomach acid is coming back up and washing it away. I called our dietitian two Fridays ago to ask about alternate protein sources. (Right now Maya can have no meat, egg yolk, or nuts, soy gives her incredible eczema, and I’m struggling trying to come up with good alternatives)
I was thinking wheat was a trigger, but she did not test positive to it, and the reflux isn’t really worse after she ingests it than when she ingests anything else. I tried a gluten free breakfast cookie and the reflux was worse than I’d seen it at that time. But then again, the reflux after the portobello burger (with a wheat bun) was the worst I’ve ever seen thus far.
Well, when I told the dietitian about Maya’s current restrictions and that the medication wasn’t working, (Maya actually says it’s worse now) she told me to call the GI doctor and tell them what was going on, because it sounded like we needed to alter treatment NOW. So I called, left a message, and waited. I heard back from them last Tuesday, and they want us to go see their allergist on site to get Maya a prescription for a supplemental protein formula. That appointment is set up for Wednesday afternoon (tomorrow). She also told me to keep on our current plan until they see her in mid February. I can’t begin to tell you how frustrating this is! There is no progress that I can see. We have projectile reflux going on here. It’s even lasting longer than it was before we started our medications. So we have worsening symptoms. This is pretty much where my head has been the past few days. To be honest, it makes the kitchen feel like a war zone to me. It feels like everything I have in there is harming my daughter and I don’t have a clue what to do next.
I’m trying to come up with good road food with Maya’s limited diet and am working on some ideas. The doctor we will be seeing tomorrow is a couple of hours away from us, and the appointment is scheduled for the late afternoon so dinner on the road will have to be had. My husband suggested that I keep in mind we have a camp stove. 🙂 I love that man, I hadn’t even thought of that.
Sorry for the scattered and slightly random post. Just keeping it real here. This is part of real life in a house with multiple food allergies and EoE. Fun right?
Thanks for stopping by!