Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...
Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.
And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.
"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."
Wednesday, April 13, 2011
In the beginning of our journey, I found Little Man's diagnosis by, yes- searching the Internet. But was I searching on open forums, support groups, and the like? No. I didn't know which ones to search in, and wasn't ready to narrow my search, I wanted to continue to keep my mind open as I searched for answers. I read medical journal articles, re-read several. This Protein Intolerance article was my nightly companion most nights- reading and re-reading the words, searching for something that made more sense with each step we took. With this article, and the help of some dietitian colleagues, I found FPIES. I read every medical journal article I could find on it, there were less than a dozen....not enough information except that it was rare and severe, and no test existed for it. I then viewed Jacks YouTube video and my heart sank, I cried, and I knew....right there on a YouTube video, someone could have been standing in my living room.
When you search FPIES in good-old Google...what comes up in between all the medical journal articles? Kids with Food Allergies forums, Baby Center FPIES community, personal blogs (now numbering over 25, were around 5 in number), even a community on Facebook. I began to read through these posts, but did not feel we "belonged" without a diagnosis. I made a few postings in the facebook group, and this is how I was led to CHOP....by a fellow mom. A mom now working diligently to change this very scenario about FPIES. Change for more awareness made, more support given, and more research done. Research guided by families, by the moms going through this day by day. She, with CHOP, established the FPIES United Family Fund. This fund, that we are raising money for to accomplish those goals.
Shortly before our trip to CHOP, I got brave and posted our full story on babycenter and asked for feedback. Immediately, the other moms replied with their experiences - some that mirrored ours, others more severe.
One mom, as I kept reading posts, seemed to me, to have a unique understanding of food and this awful illness. I sent her a message and asked about food trials and gut rest (we had been doing gut rest for months with no baseline found on elemental formula). I still have that message- I printed it out. The information she gave me changed the course of how I began to view this awful allergy. It gave me more to research, it gave me a pieces of empowerment. This is about food, I know food...or at least I should....it is my career. But I didn't know food, I didn't know allergy. Not in the way this allergy presents. This was a revolutionary moment for me with the battle I was facing myself with the medical community to recognize my son's complex condition. I have a mere 2yr.nutrition degree, with ~15years experience, not to mention 10+yrs experience as a mom, and what I thought I knew was not enough in the face of FPIES. If I can learn this illness....a medical doctor surely can.
But my reasons for learning the every aspect of this allergy are personal, I live it through my son. No text books, no research paper can teach you what a mother can about FPIES.
This mom, that first began to teach me about ingredients and recipes, and food trials and baselines- all learned from her experience with her daughter. Her doctor was helpful but not FPIES experienced, she learned every little thing on her own. Completely on her own, not only did she not have access to an FPIES knowledgeable doctor, her husband was stationed, they were living, out of the country while their daughter was beginning her FPIES journey. This FPIES mom and I have remained in close contact, she is my mentor, my go-to, my friend. Her blog, with much of her wealth of information can be found here: Baby B's FPIES Test Kitchen You can also find her weighing her insights and experiences with so many other knowledgeable FPIES mom's on Baby Center and Protein Intolerant Children (PIC).
Along this way, I have learned from so many other moms. My Australian Angel, dropping by to give advice always at the right time....and again, knowing more about the proprieties of food than I did at many turns in the road. Other moms met along the way shared invaluable information, pieced together that I could use, or simply learn from, for our puzzle. Information about food trials, reactions symptoms, shock symptoms, hospitalizations, raising siblings, coping.
As I continue my journey, another instrumental mom, who sometimes credits me for teaching her, really has it backwards as she has taught me more than I have taught her- I have no doubts. She has a way of reminding me to stretch my knowledge, past what I know, past what I've learned from Little Man....It must be the teacher in her, but mostly it is the friend in her. She is a professional FPIES mom. She is an inspiration for knowing what her daughter needs and not stopping until she finds a way to get it to her. Unlike the above mentioned mom, she had knowledgeable FPIES specialists helping in the begining of her daughters journey. Until the medical specialists ran out of information....why? Because it is a rare and complex disease, but also an individualized one. Armed with this knowledge, and a child growing in complexities, she continued her own research and has developed a plan specific to her child's needs. To read more of her journey and how she has helped her daughter, visit her blog here: Ellie Belly Updates.
Despite doctors having textbook knowledge and experiences of allergy, immunology, gastroenterology, nutrition....the one person that can help is the one that pulls that all together to fit each individual FPIES child. Right now, with this diagnosis, that one person is: Dr.Mom. No medical degree do we need, we are the professionals in FPIES.
We know our children best but this is most certainly not a call to not consult with doctors. FPIES is very complex- immunological reactions meet gut systems and flora, meets allergic responses, meets nourishment. So complex that doctors do not fully understand the true nature of it...until they learn it from our children. There are theories that there is a gene responsible for FPIES. That may be, but genes are turned off an on- and by what? By environment, by diet, by disease...our "toxic load". Where will we find answers to help FPIES children, while we wait for research to "catch up" to how fast this illness is growing? I think a whole body approach, a functional medicine approach, will undoubtedly be what brings our children health that extends past the years of controlling this allergy.