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! 🙂
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!
I have the oven going today in preparation for the coming week. There’s a bulk batch of granola in the oven right now and a bulk bread recipe is on it’s first rise. It feels good and wonderfully domestic to be getting a little ahead in our baking 🙂 It also smells heavenly in here. We have several unknowns and a busy week coming up, so I wanted to get some things done today. We also have company coming over later today, and the house smelling yummy is always a good thing!
I had a lovely helper in the kitchen this morning. He loves to help me in the kitchen. I try to let him help as much as I can so he’ll know how to handle himself in the kitchen with his dairy allergy. Granted, the time in the kitchen magically extends when I have little helpers, but I know that allowing them to help will equip them with much needed skills later on. (This is his ‘helper’ face I suppose, lol, very serious, and by the way, that’s my youngest, Joshua!)
Speaking of helpers in the kitchen, we’ll talk some more about bringing your kiddos in with you and keeping things safe for them so they can help with wild abandon and you won’t be stressed in the least!!! Doesn’t that sound magical? 🙂
Oh! Before I forget, the potato soup recipe is in the works, just have to finish formatting it! 🙂 It’ll be posted later today.
Well, it would seem that food in general is what is making Maya’s EE flare up. Oh joy, right? I’ve been documenting the time she eats, every.single.food she puts in her mouth followed by the time the reflux starts and how many refluxes she has.
Yesterday we hit 67 after a supposedly safe food. 67! In under an hour! She also hit 32, and 47. I have to say that this is rather aggravating. I mean, what on earth am I supposed to feed my child? We go back to see GI next month, February 15th actually, and we’ll schedule a rescope then.
In other news
I made an experimental cookie. They turned out tasty, but the cookies are distinctly green. Green!!!! I was a little taken aback but the kiddos wolfed them down and enjoyed them. I refrained from taking pictures as they were quite um, unattractive, and I didn’t want to share. You’re welcome 🙂
I used brown rice flour. Does anyone know why it turned green in baking? My all-buckwheat pancakes turned a funky color as well. That’s a really strange question, but I really want to know. I tried to google it, but it just turned up shroom growing advice and other random information. Totally not what I was looking for…. It seems to be an oxidation issue simply because the bottom of the cookie turned beautifully brown and the rest of the cookie that was exposed to air turned colors.
Posted in Baking, EE, Life