Our allergist appointment today was amazing. Did I mention that I love that doctor? He sat down with me for a good 30 minutes at the beginning of the appointment and we went through all the symptoms that Cutie Pie has been showing. And then you'll never guess what happened..... HE MENTIONED FPIES. Before I could throw the term out there, before I could mention the medical journal articles I had brought, before anything he said it sounded more like "enterocolitis" than an allergy. I thought I was going to jump off the chair and kiss him. I'm not crazy. I'm not over-reacting. SHE HAS WHAT I THOUGHT SHE HAD! I feel verified.
And then I realized something - although I was right and we have a label to this madness, my baby is still sick. She still can't eat. She won't have a birthday cake at her first birthday party. I can't use Cheerios to bribe her into taking her first steps. She may never experience ice cream or french fries or chicken nuggets. She may never be able to go to the movies and eat her weight in popcorn. She may never be "normal." I may never feel comfortable letting her go to school. Or spend the night at a friend's house. Or go to grandma's house in the summer. And according to our allergist, there is no evidence to say for sure if she will grow out of it. This may be the beginning of a LIFE LONG struggle with food. Maybe this is my punishment for my battle with wanting to be anorexic as a teenager (I never made it more than a day or two because I couldn't handle being hungry...lol).
So after doing a skin prick test for her current trigger foods plus some extras to rule out a typical allergy the good doctor and I sat down and tried to figure out a current plan of attack for this nasty FPIES monster. Here is what we came up with:
1. Breastfeed as long as possible. AT LEAST to a year, and then we will meet again and re-evaluate and discuss possibly slowly introducing dairy/soy into her diet.
2. Hold off on giving her any more solids at all in order to let her digestive tract mature a little more. Wait at least a month (or as long as she can tolerate only having breastmilk) and then slowly introduce veggies and then fruits and then meats, giving each food at least a week at a time before trying something new.
3. No grains, dairy, or soy AT ALL until we meet again in July.
I'm sad, relieved, depressed, and overwhelmed all at the same time. As we got back into the car the song "Unwritten" was playing on the radio and I thought the lyrics were so incredibly appropriate:
"Today is where your book begins, the rest is still unwritten."