Food Protein-Induced Entercolitis Syndrome (FPIES)– is when the body reacts to the protein in food. For some children, one food is the trigger and for others multiple foods trigger the response. Read more about FPIES here.
Last week we began to suspect Elizabeth might have FPIES. She has vomited multiple times per day her entire life. Despite avoiding formula and feeding her a very healthy whole food blend, she continued to vomit and have volume intolerance. Finally we gave in to a fundoplication surgery on March 1, hoping it would stop the vomiting, allow her to get off continuous feeds (and thus the backpack), and tolerate more volume. Stopping vomiting was a paramount concern because constant vomit causes damage to the esophagus and put her at an increased risk of aspiration (and hence, pneumonia). The fundo stopped the vomiting, but didn’t increase her volume tolerance, allow us to get off the pump OR stop the retching (although some days we had less retching and I thought she was doing better). She has also always had sooooo much mucous. The kid sneezes and her face is covered.
Anyway… here we are a week in to a total elimination diet. Elizabeth is getting an all organic blend of quinoa, baby food turkey (contains cornstarch), berries, maple syrup & olive oil with filtered water (plus her vitamins, salt, & no salt)– she’s had to increase to 1000 calories (from a previous 750-800)! We’ve added MCT oil (coconut), failed dairy (we already knew… but good to test), and trialed applesauce today for the first time. We suspect her main triggers to be dairy, rice, oats, and possibly nuts/seeds. Time will tell if this is the case or if there are more or less triggers.
For the first several days- she was STINKY!!! Talk about detox! Almost immediately her retching stopped, her stool normalized, and she had a increased interest in food!
Today- eight days in- she picked up the applesauce pouch, brought it to her mouth, closed her mouth around it and continued to suck, move it around her mouth and even swallow for about five minutes! It was a very small amount– but that is the first time she’s ever done that! A few hours later, she got to try a smoothie sample from the Vitamix demo at Costco– again, she brought it to her mouth, moved the smoothie around her mouth and took little swallows! I nearly dissolved in a puddle of tears as I whipped out my phone to video her success (while blocking shopping traffic in the aisles at Costco– sorry not sorry).
I am documenting our food trials and will bring them with me to her appointment on June 14th with an allergist/immunologist who is knowledgeable about FPIES.
The only downfall is she suddenly wants to put all the food in her mouth and has a very limited list of safe foods! I’m giving her fresh and freeze dried berries, smoothies, berry “popsicles”, quinoa, maple & berry mash, and plan to make a quinoa flour cracker to try. I am hoping we can trial quickly and gain more safe foods– but I’m also nervous. Nearly two years of non-stop puke, retching and diarrhea or constipation has left this mama with a little PTSD.