Motherhood Mondays: All about FPIES (Food Protein Induced Enterocolitis Syndrome), Part 1

Monday, May 13, 2019

Motherhood Mondays: Sharing all things birth and beyond, with specific emphasis on FPIES, navigating developmental delays, hypermobility, hypotonia, and more.

I nursed on demand for the first 4 weeks of my son's life, and routinely every 3 hours thereafter.  I knew I wanted to follow the AAP and WHO's guidelines of breastfeeding for 1-2 years, but was looking forward to introducing solids at 6 months, per the same AAP and WHO recommendations.  So when my son turned 6 months -- and I mean to say, on the very day of his 6-month birthday -- I invited my parents over and ceremoniously placed a handful of diced avocados on his high chair tray.  We all waited with bated breath to see what he would do.  And then: nothing.

He wasn't interested, and I didn't push it.

Fast forward a few months and I still couldn't get him to eat solids.  He just simply didn't care.  Still exclusively breastfeeding at this point, I would get mastitis anytime I went longer than 3 hours without nursing (I couldn't get more than one ounce per hour pumping -- my body didn't respond to it), which made it incredibly difficult to go to work.  I would drive home from work every 3 hours, but sometimes if I couldn't get away and went so much as 30 minutes over my 3-hour window, the mastitis would kick in like clockwork (hard spots, 104 fever, shivers, aches, red splotches, trips to the ER.... don't get me started).

After mastitis episode number 14,000, a close friend of mine intervened.  She drove to Target one night, bought a bag full of groceries, and dropped them off at our house with a firm warning.  "You have to get him eating solids.  You have to give yourself a break."  In agreement, I vowed to force solids on him right away, no matter what!

That night for dinner, I made him some of the rice cereal that had come from the magical grocery bag.  It took a lot of coaxing, and he didn't love it, but I got him to take several bites.  An hour later, I nursed him to sleep and laid him down in his dock-a-tot in our bed for the night.  Minutes later, from the couch in the living room, I was just opening my laptop to catch up on work when I heard him scream like I'd never heard before.  Joe ran in to check on him and yelled to me from the bedroom, "He threw up!"

My son had never thrown up in his life (nor had he ever so much as spit up!), so this was surprising to me.  What was even more surprising, though, was the fact that the vomit did not stop.  He threw up repeatedly -- projectile vomiting -- and then began to have diarrhea once the vomiting stopped.  I held and rocked him in a towel for the next couple of hours, bathing him when necessary and trading dirty towels out for fresh, clean, warm ones.  He threw up on me every single time because I refused to put him down.  His body had turned gray and limp and I didn't know it at the time, but he was having an acute "vomit to shock" reaction to the rice.  We stayed on the phone with our doctor all night who offered to come over (which is to say, we didn't make an ER trip) and eventually, my poor, sad, sickly ten-month-old allowed me to nurse him, and he kept my milk down.  Joe and I took turns staying up with him all night because I was so scared he would stop breathing in the middle of the night.  I knew he didn't have a virus or a bug (I knew this in part due to gut instinct and in part because he wasn't running a temperature) and in my heart of hearts, I knew that the rice had something to do with it -- it was just too coincidental.

Over the following days and weeks, reactions continued as we cautiously experimented with more foods.  I was fortunate enough to come across some FPIES literature online during a midnight rocking chair session after yet another acute reaction.  I read through the FPIES symptoms, checking boxes as I went, convinced that this was the awful condition suddenly plaguing our family.  I alerted our pediatrician, seeking her advice on whether or not this could be "an FPIES thing."  She agreed that it sounded likely, though she admitted her FPIES experience was somewhat lacking.

I then reached out to a friend from law school -- an attorney-turned-FPIES-educator -- with a phone call / cry for help, as I had remembered that at least one of her kids had this mysterious FPIES diagnosis.  As I shared my experiences with her, she gave me a wealth of helpful information, including a referral to a Dr. Bird at Dallas Children's Hospital.  This was crucial, as a good FPIES doctor is hard to come by, especially here in Oklahoma.  Dr. Bird, however, serves on the FPIES Medical Advisory Board and is, for lack of a better term, a freaking FPIES guru.  I made a mental note to talk to Joe about scheduling a family trip to Dallas to see this Dr. Bird.

In the meantime, my son's one-year check-up was approaching.  I was anxious to check-in with our pediatrician (whom we LOVE) to give her a face-to-face update on what she and we now fully believed to be a string of FPIES episodes.

Post-FPIES discovery; pre one-year-check up.

Upon our arrival for his one-year appointment, the nurses weighed him and measured him and sent us in the exam room to await our pediatrician's arrival.  When she entered, she bore some startling, life-altering news: our son was failure to thrive.

In the three months since our son's 9-month check-up, not only had he not grown so much as a centimeter, but he had lost weight.

I was simultaneously paralyzed and forced into action by this news.  Although I was just absolutely gutted, hearing the words "failure to thrive" also triggered something within me -- a mix of productivity and advocacy and 'mama bear' reflexes.  Before I left the pediatrician's office, I had an appointment scheduled with her pediatric dietitian, a phone appointment scheduled with a specialist in Oregon, and a new patient appointment with Dr. Bird in Dallas.

In hindsight, I realize this failure to thrive diagnosis really was the beginning of a much larger story -- one that is still being written over a year later, one whose ending is still entirely unknown to me.

And if this is the prologue of said story, then a trip to Dallas to meet with Dr. Bird would be Chapter One.

To be continued in a future installment...
Pamela said...

Jennifer, I have just now taken time/remembered to read this blog. I am so sorry! I am totally ignorant in knowing what FPIES is. But praying for you, Joe and sweet baby boy!

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