We just made it back home from meeting with the allergist at our Children’s center. I have a feeling of hope, relief, of well… yay, lol. Their whole team is fantastic. They did their job! They talked to me about EoE and explained it in a way I’ve never heard before. The doctor used a sock and pipe analogy. It totally made sense for the first time. He said that the esophagus was supposed to be like a sock, expanding and contracting to suit the food that goes down. In EoE patients, the esophagus turns into a pipe, making food very difficult to go down. He told us to avoid the top 8, validating my concern with wheat and soy. Then he gave pork back to us. Then the dietitian sat down with us and worked with me to figure out what all we could do to help Maya. I left with a plan and not feeling alone. I was very impressed and sooo very grateful. They also gave me a bunch of websites that I will share with you in a separate post so they will be easy to find.
This is the first time I have felt hopeful in a long time. This is the first time since October that my brain isn’t reeling and I feel like I can breathe. I keep taking good long deep breaths and enjoying the sensation. It’s a good day
So, to expand on the update, we are to avoid the top 8 allergens which are: dairy, egg, fish, shell fish, peanuts, tree nuts, soy, and wheat. We already avoid everything but soy and wheat, so that transition ought to be relatively simple. We are also going to be adding in Neocate powder in smoothie form three times a day to supplement the calories, protein, and fat that are absent from her current diet. Maya has lost weight in the last month being on her highly restrictive diet, so we want to reverse that and get her back on the growth charts.
And with that, I hope you all had a lovely day! Tomorrow is grocery day, so I’ll have a post up with our grocery picture sometime tomorrow afternoon.
See you then!