Two Choices

We saw a new GI doctor on Monday. The same facility, only this was the doctor that Kara's family doctor had spoke with on the phone when Kara was in the hospital, the one who suggested Cincinnati or Milwaukee for Kara's care. I was impressed with the fact that she really seemed to know FPIES and how it works. She explained all of the allergy parts of it and how complex it is. She explained how tough it is on parents, children and providers because there is never any one answer. Each situation is different - each child, each reaction at times, everything. We went on about our frustrations and discussed Cincinnati vs. Mayo, being more and more convinced that Cincinnati is the way we need to go. Then it was time to discuss our options with Kara in the meantime.

She gave us two choices. One, we can take Kara completely off ALL food but Neocate for four weeks and then she could be scoped at that point. I think we both gasped at that suggestion. NO WAY. It's hard enough explaining to Kara on a daily basis that she can't have something because it's owie on her tummy. I couldn't even fathom taking ALL food from her. We did that a year ago, it sucked with a 15 month old, I can't imagine with a 27 month old! The other is to try bringing Kara's diet down to three foods that we are pretty much certain are safe and only stick to those for 4 weeks. This could prove to be a little more difficult if she continued to react to one of those three foods, we'd have to guess at which one to remove and potentially could be back to the Neocate only if those three don't end up working out. I'm not quite sure of the plan past there - scoping at the end or not...my head was spinning a little bit by the time we left the appointment and we no sooner left the room and started talking about which foods to even put her on. We are to call her with our decision and I'll find out more then, I guess. We went back and forth between foods that we are pretty sure are safe, to foods that she likes more than others, to foods that would offer more options. This conversation consumed our ride home. In the end, we are sticking with a diet of beef, wheat and apples. That's it. Four weeks. We'll see how it goes.