Baby B's Story:
Guest Post by Amanda LeFew
Our story began shortly after our daughter was born. Early on, she had“issues” with something in my diet (reflux, green diapers, sleep issues, excessive screaming etc.) but we could never pinpoint the problem. She would scream so hard that she would stop breathing, wouldn't sleep more than 6 hours out of 24, and 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-- FPIES.
When Bridget turned 6 months old, my husband's ship was coming in for a few weeks (we were stationed overseas), 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 vomit. 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 with lethargy and diarrhea. I called the naval hospital only to be told, “It must be a stomach bug.” I then decided to make my own rice cereal-- just rice. She ate one baby spoonful, refused the rest. Two hours later, she began uncontrollably projectile vomiting, was lethargic, and again had diarrhea. I searched online for “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 additional reactions to almost 27 different foods so far, ranging in severity to include symptoms of hypotension to mild vomiting.
Now that she is older, we are much better at navigating reactions with the help of her team of doctors. Things are somewhat better, but mainly, things are different. She doesn't seem to be showing any signs of outgrowing any of her triggers currently and is still failing most new foods. With her third birthday only a week away, our priorities have certainly changed. Instead of simply waiting for her to outgrow FPIES and getting her through the day to day, we focus a lot more on building her coping skills, teaching her how to communicate well with us, and setting clear and age-approraite boundaries to help her know what is and what isn't safe. I can't change or determine what FPIES has or will do to alter her day to day life, but I can help her to approach each day with tools that can help her to navigate these uncertain waters.
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. And now, as a board member for The FPIES Foundation (www.thefpiesfoundation.org), I can better reach out to others using the tools that we have developed to help Bridget.
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 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.
Follow Our Story: www.babybeesfpiestestkitchen.blogspot.com