Our FPIES Story
Nichole L. Huff, Ph.D., CFLE
My firstborn was a textbook baby, which was fitting because
I prepped for motherhood as best I knew how—I
studied. I read parenting magazines
and child development books and perused baby websites. Surely my daughter read them too, never
missing a milestone. Parenthood seemed
to come naturally, as did our decision to try for Baby #2.
As the ever-so-experienced mom of an 18-month-old, my prep
for our son’s delivery was much more relaxed.
After all, I’d been there and done that.
How different could another baby be?
And so our FPIES story
began.
At 11 days old, after an evening feeding, my son began to
vomit. Profusely. From his nose and
mouth came what appeared to be thick, undigested breast milk. I tried to clear his airways, but couldn't
work fast enough. He began to choke, his
body paled, and his arms and legs became lifeless. My mother and husband worked to keep our son
alive while I shielded our daughter from the scene, called 9-1-1, and waited
for the ambulance to arrive. My son’s cries never sounded so beautiful.
The hospital personnel were perplexed, as was the
pediatrician during follow-up care. It’s rare that a baby has a reaction to his
mother’s milk, I was told. After
trying an elimination diet to no avail, I offered my son cow’s-milk
formula. The first time, he did
well. The second? Two hours later, as we attempted our first
family-of-four road trip, I yanked my eight-week-old from his infant seat while
my husband pulled off of the Interstate.
My son’s vomiting was once again intense and he became pale and
lethargic. We spent the next two hours
parked at a gas station as I held my baby boy, too scared to move.
Following my mother’s intuition (as our pediatrician was of
little help, telling me It’s normal, that It’s likely reflux, and that Babies that young rarely have milk allergies),
I tried a soy-based formula containing no milk derivatives, which seemed to do
the trick. His reactions didn't return
until he was seven months old after having tried a jarred baby food. Like clockwork, two-to-three hours later, my son
was throwing up, losing color, and his body was becoming limp. I retrieved the food label, and sure enough,
milk was an ingredient.
Luckily for us we had relocated for my husband’s work a few
months prior and found a fantastic pediatrician who closely monitored our
situation. She also promptly referred us
to a pediatric allergy specialist who properly diagnosed our son with Food
Protein-Induced Entercolitis Syndrome (FPIES), specific to milk proteins. She equipped me with information, taught me
how to properly read food labels, and educated me so that I could educate those
who interacted with my son.
Following his diagnosis, I cried. A lot. Partially because I was so relieved to have a
medical answer to the food struggles we’d been having. But also, I cried for the loss of normalcy
that my son would experience. I grieved
for him, and for the “textbook” childhood he wouldn’t have. I can remember sobbing uncontrollably in the
aisle of a grocery store wondering if my son would be able to have a first
birthday cake. I decided that day that, yes, he would. If my son had FPIES, then I would become an
FPIES expert. I learned to remove the
world “normal” from my vocabulary, deciding to not only accept his dietary
restrictions, but to celebrate them.
(And slowly understanding that no child was textbook, no family normal,
and that most people were managing a life stressor of some sort.)
In the weeks and months that followed, I spent countless
hours researching FPIES. I spent
evenings alone at different grocery stores, walking each aisle, carefully
reading food labels. I learned which
brands were safe and which weren’t. I
tried recipes and adopted new cooking strategies. I learned to make safe substitutions while
cooking so that—quite literally—my
son could not only have his cake, but he could eat it too.
Being the mom of a kid with a food allergy is
challenging. There is the constant fear
that one wrong bite could send your child into shock or make them terribly
sick. Having now managed my son’s FPIES
daily for four years (and having experienced a failed oral-food challenge at
age two and a half), my approach to parenting has evolved. We’ve taken those scary steps that every
parent of a special-needs child faces.
From leaving your child with a babysitter to selecting a safe preschool
to attending birthday parties and everyday events that are otherwise taken for
granted. And we’ve not only survived—we’ve thrived in spite of it all.
In the months to come, I will talk more about parenting a child with FPIES—not only as an FPIES mom, but
also as a professor of child development and family relationships. From talking with healthcare professionals,
to friends and family, to educators, to childcare providers, to
talking with your FPIES child.
I’ll discuss ideas for making your child feel included in a world that
often ostracizes differences. I’ll
explore ways that you can take care of yourself (despite feeling overwhelmed as
you manage your family’s own FPIES story).
If you have a special topic that you’d like me to address, please let me
know.
It takes a village to raise a child.
It takes an informed, understanding,
cautious, and collaborative village to raise a child with food allergies.
Nichole Langley Huff
is an assistant professor and Extension Specialist at North Carolina State
University. Dr. Huff has a Ph.D. in
Family Sciences and a M.S. in Marriage and Family Therapy. She is a Certified Family Life Educator with
the National Council on Family Relations.
Her areas of research include child development, parent-child
communication, and bio-psycho-social health.
Dr. Huff also has a weekly parenting blog at http://soapboxmommy.com/
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