We had a follow up with the Allergist today. I feel so lucky to have found him. He may not have the most experience with FPIES kids, but he seems so on top of things and I feel like we want the same things for Jake.
We're going to start meats! Turkey for my little turkey! I am on the hunt for a fresh, organic turkey to roast for Jake. We will take it slow for a week, maybe a tablespoon of turkey, then increase our serving size over a few weeks. I hope the extra protein will help keep Jake full longer at night. The night nursing is killing me right now.
Dr. S. suggested sorghum to try as our next grain. It's like he's reading my mind!
I brought up eggs. I think being an allergist he's just leary of eggs all together. He agreed to try egg yolks, baked in a muffin for at least 30 minutes at 350 to help break down the proteins.
As for milk, I wonder if he'll ever let us try anything dairy! His other FPIES patient has a trigger of milk. He is 2 1/2. He was just in yesterday to re-trial milk. I guess it was a horrible fail. Four hours had passed and they really thought he was going to be fine, then BAM. Reaction. The IV he had in ready to go, came out. They ended up calling an amblulance to take the little guy in to be monitored in the ER. How heartbreaking. I feel so horrible for that family. I'm so scared for the day we re-trial rice and oats.
Anyway, while Jake doesn't show any discomfort from my dairy intake, we agreed to hold off on milk for now.
We go back to the allergist in four months. I'm hoping we have another grain and few meats passed by then!
Can I pick your brain? My daughter 12 mo, was just "diagnosed" with something that acts like a mild FPIES, which through my own research maybe Dietary protein enteropathy. How old is your little one? You BF I see, do you keep journals of your food and her food, how do you "trial" food and do I need to worry about that...see I told you this would be long. you can email me a harmony671@gmail.com. Thanks!
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