Anyone in the Saint Louis area?
I am sorry its late...but I am...where are you? seems there is noone fpies affiliated anywhere NEAR me!
We are in Saint Louis. You would think with 3 Children's hospital's here and as many people are here, there would be more of us
What doctors are you seeing? We started with Laura Esswein with Mercy, then we tried Dr. Bloomberg at Children's. We LOVE him but he is about to retire. We also had a third opinion with Dr. Becker at Cardinal Glennon. He did his residency at CHOP, so I was hopeful that he would have more insight into this condition. Ryker was just diagnosed with Eosinophylic Gastroenteritis this past Friday. I'm anxiously waiting for Dr. Becker's office to call me with more on what to do for him. Our journey started in January when Ryker was 6.5 months old and had several vomiting episodes (that we now know was from rice) but on January 5 he almost died from the reaction. He had to be airlifted to Children's and we spent several days in the ICU. I've never been so scared in my life!! No one there could figure out what happened to him and within 24 hours he was back to his normal self. Our babysitter of all people is the one who diagnosed him with FPIES. She had taken care of another child with the syndrome and is very familiar with it. Crazy how things happen for a reason!!
I am also in St. Louis and looking for a knowledgable and INVOLVED pediatrician. My G/B has been diagnosed but thats pretty much it, she is on her own. Until the next reaction where we have a nice letter to present to the ER on what they need to do. Darcye8, I just read your story and I am so glad they were able to to diagnose Ryker in time. Reading everyone else's stories makes me feel lucky because it seems Ma'Jaia can eat more than most (16 months) but they only other problem is when we think a food is safe and then BAM, its not anymore. That is so scary! The allergist that diagnosed her had one visit, and then scheduled a controlled feeding for next year to see if she grew out of it. I just don't think that is enough. There should be some monitoring and follow up. If any of you from St. Louis can offer any referals that would be awesome.
My little one is 9 months now and was recently diagnosed with FPIES. It's so frustrating, bc it seems like no one knows anything about it. Has anyone found a good allergist? We're getting mixed messages from Allergist/GI/Pediatrician in regards to food trials, so we're not sure what to do. One said allow 3 reactions, one said 1 reaction is enough to pull, one said something even different. He also has Ige allergies, so we have the FPIES reactions and normal food allergies.
We have a 12 month old in St. Louis who was diagnosed with FPIES at 5 months (oats). Since then, she has also failed soy, eggs (ER visit), and sweet potatoes. We would love to connect with other St. Louis FPIES families and share experiences, doctor recommendations, etc.