Neocate: Two More Weeks

Kara has been on her Neocate Jr only diet for two weeks. Last Thursday was the end of the two week trial and we were to update GI at that time.

I called and ran into my usual problems with the nurse coordinator. She, at some point in the conversation, made the mention that some children have to be on Neocate for sometimes six months before they are ready for food. NO NO NO. Kara is better, her tummy is much better, she's at baseline as far as her tummy goes, and our allergist said she should be scoped before we begin food trials. I got extremely frustrated with her again (this is an every.single.conversation.occurrence with her) and finally asked to have the doctor call me so I could talk to her. The next morning I called Kara's allergy office. The staff at her new allergist's office is amazing. I explained my conversation with the nurse at GI and how frustrating it is for us and she said they would get working on contacting the U right away.

That day, after work, Kara's GI called me. We discussed the plan, and she explained that it was discussed with Allergy and that Kara is to do two more weeks of Neocate. Her gut is well on it's way to being healed but we want to keep going with this before jumping right in on foods again. We ended up going through this big long plan - we are doing a total of four weeks of formula only and then starting a trial of corn, where Kara will have corn pasta, kix, corn chex, polenta, grits and a few other corn-only foods. She will do this for 10-14 days (assuming she can tolerate it for this long) and then we will call and update GI, at the same time, scheduling a scope. After the corn trial we will do the same with a potato trial for 10-14 days and the scope will be right after that, so roughly six weeks away. We will work together on developing our food trial plan. For now we have a list that we will strictly avoid due to her dairy and peanut allergy and her FPIES reactions to soy, dairy, rice, oat, pear and green bean.

This is our plan. There are a few other things going on - we still have those Mayo appointments scheduled (which I'm holding onto for now simply because of the communication problems we seem to have with the U and needing a MN GI available despite what happens with Cinci), we have the Cinci stuff in the works, and I'll keep in close touch with Kara's Allergist to help me through all of this. I think I'm going to be leaning on her office for a lot more support in the next few weeks - they are wonderful and have really helped us in the last few weeks!

So - here we are. Here's our plan and I'm ok with it. Neocate only is tough but honestly, it's a lot easier than I thought it would be. Kara has been great with it - she seems to understand and be ok that the doctor said bottles only but when she has her meltdowns, they are pretty heartbreaking. We can do this - it's helping our girl!