I began searching for FPIES allergists in Minnesota and didn't find anything promising except for blogs written by mothers of children with FPIES. I contacted one for information and found out there was a large network of FPIES moms sharing resources and supporting each other. I also found out about Dr. Helm at Allergy and Asthma Care, P.A., who is one of the only allergists to not only recognize FPIES, but also to equip patients with letters and information on FPIES to take along to the ER. I was eager to get my hands on an official letter that would explain to the ER staff that Punky needed an IV to stop an FPIES reaction.
We saw Dr. Helm last week and I can now vouch for him as the go-to guy if you suspect FPIES. I think what impressed me most is that he took the time to listen to my story and answer all my questions. After going through allergy diagnoses with Boo, I am used to doctors who interject, "but..." when I start to talk about what I suspect is going on. I'm not saying all doctors are jerks. I imagine a good part of patient visits are spent telling patients, "no, you don't have the thing you've researched on the internet." I've certainly Googled my share of symptoms and all but convinced myself I had a wide array of diseases.
Dr. Helm gave me Punky's "ER Letter" and copies of some FPIES information from medical journals to hand out to any doctor we see, that doesn't have experience with FPIES. He even sent letters to our pediatrician and the first allergist we saw. Awesome!
So now what?
We know that Punky can't have rice. We have a list of common FPIES trigger foods that we're going to avoid for now. So we can start trialing other foods. Our goal, according to Dr. Helm, is to figure out a variety of foods Punky can safely eat; some fruits and veggies, carbohydrates, and meats. Sounds easy, right?
But here's the list: cow milk, soy, oats, barley, rice, squash, sweet potato, pea, egg, peanut, and poultry.
He did say that we could probably give her half the foods on the list and she wouldn't react to them. He also said I shouldn't be gun shy about trying foods just because we had seen a severe reaction to rice. I get that. I've been through this over and over in my head and I try to remind myself that there are some FPIES kids that only have one or two triggers. What is holding me back right now is the memory of those two awful nights when Punky was vomiting. I remember gripping the steering wheel as I drove her to Children's, afraid to hear her throwing up again, choking, or becoming unresponsive. Going through that experience again and again is going to be reality for us if she is intolerant to more foods.