Our journey started right away in the hospital with the birth of our first son. After breastfeeding him, I went to change his diaper and realized the skin on the side of his groin area had ripped off. He was bleeding into his diaper. The nurses told me not to worry; it was most likely sensitive skin.

At 3 weeks old he was still having issues with my breast milk so we tried formula for the first time… 1 ounce. This was our first FPIES reaction. Within 2 hours he was moaning and crying. An hour later he was howling. Back arching, inconsolable screaming. Then, the vomiting came.  It was projectile vomiting, retching until there was nothing left but bile. It lasted for hours. He was limp and exhausted. We fell asleep covered in bile. According to the doctors, this was a stomach flu.

We continued breastfeeding on an elimination diet.  I pulled most foods out of my diet and slowly reintroduced what I could … I lost over 30 lbs and my son was no longer thriving.  Once an offending food was removed from my diet, he could no longer drink any “frozen breastmilk” that had the offending food protein in it.  Each introduction to food was a slow/ painful process.  We never knew what was going to make him sick …not just the classic FPIES reaction, but the more subtle immune system reactions.  He was sick much of the time.

At 10.5 months old and still no answers, both mom and son were growing  ill from the extreme food restrictions.  All allergy tests were inconclusive or negative.  He was no longer reacting to the straight histamine tests.  The allergist sent me out of her office with 24 cans of Elecare.  She had never seen anything like my son and didn’t have anything to diagnose him with.

We tried the Elecare that night.  Isaac drank 6 oz over 4 hours … then wouldn’t drink any more for over 2 days.  His reflux was horrible and he started spitting everything up again.   We were back to watered down breast milk.

We had no answers, nowhere to turn, and a very sick baby.

Time to play Dr. Mom, and get answers on Google.  I came across a video of a little boy named “Jack” on YOUTUBE and my life was changed in an instant!  This was our same fight!  I felt hope in the midst of our despair!

I went armed with this information to the doctor.   We were given Neocate Jr. and fortunately, it saved our lives! Isaac drank his first 8oz bottle EVER and then sat up and made the “sign” for more.  He drank 16oz  in one sitting!  He never tried to nurse again!  We were on the right path!  Mommy could eat real food and Isaac was receiving the nourishment his body so desperately needed.

We managed well with Neocate Jr.and were repeatedly told to “hang tight” as most kids outgrow it by the age of 3 or so.  We had enough safe foods to fill the gaps and for the first time in a year… we weren’t constantly struggling.

Then came baby number 2!

He also started his journey right away in the hospital.

After 8 weeks of the extreme elimination diet, we switched him over to Neocate Infant and watched our fussy, screaming, inconsolable, refluxing- children become a happy, fun loving joy!  We also watched him change colors.  What we thought to be a ruddy complexion was a head to toe rash.

In the past 5 years, we have seen 3 Pediatricians, 3 gastroenterologists, 4 allergy specialists, 1 natural path … all told me diagnosis would include going to CHOP (Children’s Hospital of Philadelphia) .  Since most kids do outgrow it and we were managing well, “burying our heads in the sand” and “waiting for the storm to pass” approach made sense to us. Why go through all the trouble to diagnose our children when the treatment plan wouldn’t change?
With no support system to help guide us through the murky waters…it has been a difficult journey!

Our oldest son Isaac is now 5.5 years old, our youngest son Caleb is 3.5 . We haven’t outgrown it yet.   Between them, there are 23 safe foods including all oils, spices, and baking ingredients. All other food proteins cause some form of ripped skin, mucous stools, constipation, vomiting, lethargy, rashes, high fevers, eczema, acidic stools, headaches, diarrhea, or a lovely combination of everything mixed together.

We are now seeing a PHENOMENAL TEAM out Mass General Boston (Food Allergy Clinic)  Dr. Qian Yuan (GI) and Dr. Wayne Shreffler are amazing to work with!  It is empowering to have a team working with you on what foods to try, when to push through and when to stop.  If I have two  pieces of advice to offer you …ALWAYS LISTEN TO YOUR MOMMY GUT INSTINCTS … and… GET DIAGNOSED!  Get a support team to help you!   This is a long, hard, and weary battle!

We still have no official diagnosis…. YET.  But have had many classic FPIES reactions; many non-Ige mediated reactions; many believed EoE reactions.  We now have a team in place who is working with us to expand my children’s diets and to get them the help they need.

Our children are our hero’s!  Their laughter is contagious!  Their spirit is perseverance!

We are so blessed~

Page published: April 8, 2013. Copyright © 2012,The FPIES Foundation