Our story began shortly after our daughter was born in Yokohama, Japan. We were stationed overseas and my husband was deployed throughout much of Bridget’s infancy. From day one she was fussy. By three weeks old, she would scream for hours, sometimes screaming so hard that she would stop breathing. She screamed inconsolably in both the car and stroller– I remember hating grocery day. As for sleep, we didn’t get much– she slept 6 hours total in a 24 hour period. Early on, Bridget had“issues” with something in my diet (reflux, green diapers, sleep issues, etc.) but we could never pinpoint the problem. There were a few unexplained episodes of projectile vomiting pre-solids, but despite sensing that something was very wrong, we were blissfully ignorant to the problem that was brewing– Food Protein-Induced Enterocolitis Syndrome.
When Bridget turned 6 months, my husband’s ship was coming in for a few weeks, so we decided to start solids. Her pediatrician advised that solids could lessen her worsening reflux. We started with rice cereal and exactly 5 hours later, hearing gagging on the monitor, found her in bed covered in what I thought was BAD reflux. She was very groggy, which was strange for her. After cleaning sheets, comforter and baby, we decided to wait a week before trying solids again. Our second attempt resulted in delayed onset, projectile vomiting. Again, she was groggy and now had diarrhea. I called the naval hospital only to be told, “It must be a stomach bug.” After talking with my amazing, food allergy smart friend, I decided to make my own rice cereal– just rice. We waited another week and tried again. She ate one baby spoonful, refused the rest. Two hours later, Bridget began uncontrolably projectile vomiting; she was groggy afterwards and had a day of diarrhea. So I googled “delayed onset vomiting + 2-5 hours + rice cereal,” and I discovered the world of FPIES that had, seemingly, already discovered us.
After bringing the details of her reactions along with some FPIES articles to her pediatrician, she was officially diagnosed. Since that time, she has had two more severe reactions– sweet potatoes and avocados. Both were following multiple ingestions. The avocado reaction required two ER visits after ingesting less than ¼ oz and it took her almost three months to fully recover. She has experienced minor reactions to over 20 different foods so far.
It never ceases to amaze me how this journey continually brings me back to my professional life as a board-certified Music Therapist (MT-BC). I was constantly challenged with creating better ways to foster adaptation and modification in order to bring about therapeutic goals for patients. Here we are in the FPIES world, and concepts of adaptation and modification are daily words to live by. We adapt to foods we CAN give our children and try to convert tiny menus into varied sensory and flavorful experiences. We modify the environment to reduce potential for accidental exposure. We adapt to and modify our own expectations about food and keeping our children safe.
Our quest, though not our path, has been simple– a constant uphill push towards normalcy. I work hard to create “normal toddler” recipes for my daughter and keep a recipe blog to share with other families. I know that simply baking a “special cookie” is not going take FPIES away, as much as I wish it could. But I focus on this because we live for these moments when we are trapped inside this “bubble”— a moment to see our child enjoy cookies and “milk” minus a hospital trial, to see our child play with craft dough without worrying about a reaction. . . a moment to see our child through non-FPIES eyes, a moment to see our child simply being a child in a child’s world.
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The LeFew family was featured in an article and video by a local ABC affiliate. View Story
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Page published: June 19, 2012.Copyright © 2012,The FPIES Foundation