Cutie Pie had her check-up with the allergist today. It's been six months since we've seen him and a LOT has happened. I've always had a lot of respect for him, and we've been patients of his since Big Brother was nine months old and diagnosed with multiple food allergies. I've sung his praises to anyone who wanted to listen. He's never treated my like a crazy mom - even when I was convinced Big Brother was developing new allergies. I've recommended him to lots of other local (or semi-local) FPIES moms.
Today it was all I could do to just stand up in the middle of our appointment and walk out. What a joke. First off, our appointment was at 9:30 in the morning - one of the first appointments of the day. Somehow they were already half an hour behind schedule, so I ended up sitting in a room that was about 12 square feet with two small kids. I was already irritated by the time he came in. And then he opened his mouth and it became very obvious that I was there to teach him about FPIES, or at least what FPIES is like for Cutie Pie. Pretty much our entire appointment was me telling him what we had done and where we wanted to go from here. I told him how Cutie Pie has completely refused any food from a spoon since her quinoa fail. I told him that we were having a hard time getting her to try new foods. His response? Puree some of the new food and mix it in with the things she likes to eat. Um.....were you listening when I said she didn't eat purees? Then I explained how she pretty much survives on my breastmilk and a couple bites at each meal and how the only four foods she actually will eat are avocado, watermelon, chicken, and potato. His response? Well go ahead a trial dairy because she is almost a year old and you don't need to breastfeed her past a year. Umm.....really? Then he went on to explain that I needed to just keep trying those other foods because there is no way she has FPIES to fruits or veggies. Except that she does. When I brought up the sweet potatoes he did admit he has another patient that reacts to them too. Isn't sweet potatoes a vegetable? Hmmm.... contradict yourself much? Then I asked about the correlation between her refusing foods and they being possible trigger foods. He said there is no way that her not eating them is a sign she would react. He explained that with IgE allergies you might notice an immediate reaction in your mouth, but not with FPIES. He said with FPIES it takes hours so there is no way to associate the taste of a food with a reaction. At first that made sense, but then I started to think about it - if (as he claims) kids outgrow it by age 3 then I'm wondering how many times he has heard first hand that a food doesn't hurt until it has sat in your system for a couple hours. Generally babies and toddlers don't have the vocabulary to explain funny feelings in their mouths....
By that point I was just ready to leave. I basically just sat there and tuned him out and waited for him to be done talking. He said to come back in six months and we will test her again for her peanut allergy and talk about possibly reintroducing rice, because you know - that sounds like a good idea.
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