We heard good things about an allergist in the town we worked in, so we decided to go there and got in on February 6th. We'll call him Dr. Uninformed. He was a nice enough guy, and stated he knew about FPIES. He did the allergy testing on Acorn, and nothing came up, which we expected because FPIES triggers aren't the type of allergies that show up on these tests. He briefly talked to us and mentioned that FPIES is a milk and soy intolerance, and to go ahead and start feeding her any solids we normally would, starting with oatmeal and rice cereal. I asked to him to clarify, and he again said it's perfectly fine to just go ahead and start any solids, each one for the normal 2-3 days. I already made up in my mind that we would go somewhere else, because I knew better than that just from reading about it on my own. I called him back that day and let him know that I was confused about his recommendation, because everything I had read said that rice and oats were two of the biggest triggers. He was nice about it, but said that was inaccurate, it's just milk and soy, and no other foods should be a problem. We went back and forth on this and I asked him if I could send him the information I had. I emailed him the articles and links I had, which specifically stated to avoid rice and oats, to work with an allergist on how to start slowly with particular foods, and that FPIES is much more severe than a milk and soy intolerance. He emailed back that we should not start solids at this time, and we would do it in the office at a later date. I assume he realized he needs to learn about FPIES.
I called the hospitalist who gave the diagnosis, and she gave me the name of an allergist about an hour from us who has experience in FPIES. I also found a gastroenterologist a few hours away who is listed on a website as the only one in our state with experience. We went to the allergist on February 13th, who we'll call Dr. Informed. Because this disorder (disease? I don't even know) is so rare, she's actually only had six patients with it in her seven years as a doctor, and four of those were in a big city in another state. She was amazing and spent a lot of time talking to us. She saw our long list of questions and went over them one by one. She wrote out a schedule of how to start solids, and gave us a detailed letter to take to the ER with us, if (or likely when) we go again. We talked about how to know the difference between when to take her to the hospital, and when to call 911. This is not a fun conversation, but necessary.
The food schedule will go like this: Until the age of one we can only introduce pears, bananas and potatoes. We will give her one small bite and then wait an hour. Over the next hour we'll give her half of a serving. We will give just one food for 2-3 weeks (if there's no reaction), and then start the second food. After she turns one, we can try wheat, legumes, squash, sweet potato, eggs, chicken and turkey, following the same slow introductions. Very last we will try oats and rice (Thanks for the terrible advice, Dr. Uninformed!). Around age three we will try to reintroduce milk, soy, and any other foods that ended up to be triggers. We will do these in the office with easy access to the hospital. Many children tend to outgrow FPIES by age thee, so hopefully she will be one of them.
I called the hospitalist who gave the diagnosis, and she gave me the name of an allergist about an hour from us who has experience in FPIES. I also found a gastroenterologist a few hours away who is listed on a website as the only one in our state with experience. We went to the allergist on February 13th, who we'll call Dr. Informed. Because this disorder (disease? I don't even know) is so rare, she's actually only had six patients with it in her seven years as a doctor, and four of those were in a big city in another state. She was amazing and spent a lot of time talking to us. She saw our long list of questions and went over them one by one. She wrote out a schedule of how to start solids, and gave us a detailed letter to take to the ER with us, if (or likely when) we go again. We talked about how to know the difference between when to take her to the hospital, and when to call 911. This is not a fun conversation, but necessary.
The food schedule will go like this: Until the age of one we can only introduce pears, bananas and potatoes. We will give her one small bite and then wait an hour. Over the next hour we'll give her half of a serving. We will give just one food for 2-3 weeks (if there's no reaction), and then start the second food. After she turns one, we can try wheat, legumes, squash, sweet potato, eggs, chicken and turkey, following the same slow introductions. Very last we will try oats and rice (Thanks for the terrible advice, Dr. Uninformed!). Around age three we will try to reintroduce milk, soy, and any other foods that ended up to be triggers. We will do these in the office with easy access to the hospital. Many children tend to outgrow FPIES by age thee, so hopefully she will be one of them.