Yesterday was an exciting day for CutiePie. We started off the day by casting our votes for the next President and then it was off to Cincinnati Children's Hospital for a consultation with a new allergist. The hospital itself is so intimidating to me. Just floors and floors and building after building of doctors and sick kids. Just walking in the doors made me want to cry. It was a whole host of mixed feelings for me being there- anxiety for CutiePie's appointment, hope for some real answers, guilt that I was there with a mostly healthy little girl, sadness for the very very sick kids that I was sharing that building with, and just an overall feeling of frustration that all those doctors within those walls can do NOTHING to make my baby better. ::sigh::
All that aside, the allergist appointment itself was fairly productive. We were there for three long hours, and most of that time was actually spent with the doctors/nurses. Our doctor wanted to talk about each of CutiePie's severe reactions in detail as he typed it into her chart right then and there. He asked a million questions and we talked about a million things related to CutiePie's issues. Some of the things we talked about gave me some hope that he knew what he was talking about, but honestly nothing he told me about FPIES or the treatment was new news. I do feel like he listened to me a lot better than our old allergist and I feel like he actually cared about CutiePie and her quality of life. But I think that's the frustrating thing about FPIES. There's not really anything anyone else can do for her. It's just a day by day get through it kind of disease. Try something and if it doesn't work try something else. At the end of the day it is up to us as parents to make the decisions for CutiePie. For example, he told us that because she didn't have the horrible scary awful vomiting with oats that she likely was okay with them. Considering it coincided with crazy bad eczema and mucusy lime-green poops which cleared up as soon as oats were out of her (and my) diet, I don't really care if he thought oats was a trigger for her or not. I'm not feeding them to her.
After we were done talking to the allergist, he suggested having the dietician come in there and talk to us and evaluate CutiePie's diet to see if she could suggest some foods/supplements/whatever that could help her have a more complete diet and increase her calories so she might actually gain some weight. I think talking to her was more helpful than seeing the allergist. She gave us some great tips on increasing her calorie intake and gave us a goal for CutiePie to get about 950 calories/day. Right now she is getting about 350 calories/day from my milk, so we have a lot of work to do. We also talked about weaning her off of my milk and onto regular whole milk, which I think we will start thinking about after the first of the year. She also suggested we get CutiePie on the waiting list for the feeding therapy team at Childrens. I am waiting on a call from them to make that happen. Hopefully that will help her get over some of her food aversions which will in return help her get more, get more calories, and gain some weight.
Our original reason for visiting was to talk about the possibility of CutiePie also having an Eosinophilic Gastrointestinal Disorder (EGID). The allergist said it was unlikely she has both FPIES and an EGID, but he did say he has seen kids with FPIES end up getting an EGID diagnosis later in life. He kinda came across as thinking a kid may outgrow FPIES and then develop an EGID. However, he did say with her poor growth it may be wise to have her scoped and evaluated. He wants our pediatrician to reevaluate her growth and then possibly refer us to a GI specialist. I think I want to hold off on that for a couple months though and give us the chance to work with the feeding therapy and the dietician to try and see if we can kinda get her to put on some weight and eat a little more before we take any steps in any other directions.
So tonight I am doing some high calorie FPIES friendly cooking. Up tonight - spinach dip to go with her CheeCha puffs. Because you know, adding spinach into some cream cheese and oil and mayo totally gives it a health-food feel! ;)