Meet the PIC Team: Rhonda

When my son, Sebastian was born, he was such a happy little guy, but I would notice in the evenings that he would get so fussy, scream, arch his back and be generally inconsolable.  He would constantly nurse to try to help his tummy feel better.  He also had very frequent green mucous stools: pretty typical symptoms for protein intolerant kiddos.  In any case, the pediatrician we had at that time told me it was normal.  Being a first time mom, I listened  to this, at first, since it was coming from a doctor.  At 2 months, I found blood in my son's stool and took it in and it tested positive for blood, which is when he was diagnosed with MSPI.


After eliminating all milk and soy, my son made a dramatic improvement from where we started, but I could tell he still was not comfortable and after two months was still having blood in his stools.  At this point, I started a food diary to try to identify what my son was reacting to. Through this, I was able to identify that corn, eggs, citrus, coffee, and chocolate were all offenders.  At this point, I was still trying to figure out how to avoid corn and Sebastian was still having issues, so I eliminated the top 8, plus the items mentioned above and beef, apples, pears, and some other miscellaneous items.


For a couple of months, I was pretty much on a TED diet, just to get to a good baseline.  My son was finally doing well and not having the discomfort that he had been having.  I also switched to a new pediatrician (nurse practitioner and lactation consultant) just before starting solids, she is very knowledgeable and has been  great to work with.  It is muchmore difficult when you are managing a TED diet, food diaries, and trying to keep your baby on the growth chart, without the support of your child's doctor.  It was so nice to find a medical professional who understood what we were going through and had experience with many food intolerant babies. When my son started solids at 6 months, his reflux went out of control. With her help we found a medication that worked and he starting passing food trials.


 At 15 months, Sebastian was still nursing and had 23 foods that he could safely eat. He was at 50% for height and 1% for weight. Trying to help him gain weight has been and still is a constant struggle, but since he is staying on the curve and meeting developmental milestones, his Doctor was happy. Now close to two years later, he has jumped up to 12% for weight and the list of foods his is intolerant to is finally shorter to name off, then the safe foods. He still has several foods that he is intolerant to and reflux, but has come a long way. I have learned so much from all the other parents struggling through this and know that we would not be where we are today, if not for all the support from other parents along the way.

Meet The PIC Team: Amanda

My name is Amanda and my story began March, 2009, when
my beautiful baby girl was born while we were stationed in Japan.  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 slept only 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 came 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. After cleaning sheets, comforter and a groggy
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 uncontrolable projectile
vomiting; she was groggy and had a day of diarrhea. I googled “delayed
onset vomiting + 2-5 hours + rice cereal,” and discovered the world of
FPIES that had, seemingly, already discovered us.

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. It took her almost
three months to fully recover. She has had “minor” reactions to eight
foods and patch test fails to six additional foods.

Our journey with doctors was frustrating with a few bright spots. Our
pediatrician at the time of Bridget's first reaction was a good doctor,
though uninformed about FPIES. He worked with us but until her avocado
reaction, I am unsure if he appreciated the true severity of Bridget's
FPIES. Our best medical resource overseas was the WICO dietician.  She
gave me inspiration to create “meals” for Bridget with her small menu.
Recently, I happily found an amazing team of docs for Bridget at the
Children's Hospital of Boston. We see them regularly and feel like we are
finally being heard and understood.

It never ceases to amaze me how all of 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 to bring about therapeutic goals for patients.
Here we are in the PI world, where 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
Bridget and keep a recipe blog to share with other families. I know that
simply baking a “special cookie” is not going take FPIES away-- I wish it were that simple.
But I focus on this because we live for moments when we
are trapped inside the PI 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-PI eyes, a moment to see our child simply being a child
in a child's world.

I came across the PIC foundation when looking for more information about FPIES
upon our arrival to the states. I was so honored to join this board and through my
involvement with PIC, I hope to reach out to other parents and medical professionals
by providing support and advocating for awareness of PI.