Friday, November 9, 2012

Gabby's FPIES story...



When Gabby was just 8 weeks old I knew there was something different about her digestive system.  She was constantly throwing up and had diarrhea.  She had frequent heart-burn and indigestion.  Her poor bottom ALWAYS had a painfull rash.  No matter what I did, nothing helped.  She was often lethargic and listless after feedings.  She cried and cried, obviously in pain.  Then, I started seeing blood in her vomit and stool.  Her pediatrician wanted to discuss her "failure to thrive".  No words a mother EVER wants to hear about her child.  We were referred to a specialist, Dr. Hendershot, who has a background in pediatrics and specialized in allergy and immunology.  He quickly helped us solve the mystery and got Gabby on a path to recovery.  She was diagnosed with Food Protein-induced Enterocolitis Syndrome (FPIES).  It's just a fancy way of saying her digestive system is intolerant to certain food proteins and it caused her to develop colotis.

Common treatment is to identify and eliminate the offensive foods.  This was a bit more complicated because I was committed to breastfeeding.  I immediately avoided milk, soy, corn, egg, peanuts and rice.  I avoided all 6 of these food groups for 2 months and Gabby recovered remarkable well.  By the way, only about 50% of nursing mothers transfer enough whole food protein through their breast milk to cause a problem.  Lucky us!  For the next two weeks, I continued to avoid our top 6 but slowly added rice.  After no negative effects in Gabby's health, I repeated the process with corn.  Within a couple months, I was avoiding milk and eggs, only.  It was a difficult way to eat, at first.  We were used to reading labels to avoid milk, eggs and peanuts because of Emmy's food allergies, but it was different when I had to live it myself.  When my breast milk dried-up at 8 months, we started Gabby on a soy-based formula without any problems.  As she grew, we added a new solid food every week.  I always kept a food diary and documented her reactions so we could find a correlation, if needed.

The reason I tell you this story now is because Gabby just had a follow-up appointment with Dr. Hendershot this week.  He said most children outgrow the intolerance by age 3.  Those who don't often have troubles with eosinophilic disorders.  I am happy to report that the only food group Gabby is avoiding is soy.  Did you hear that, Gabby is drinking regular milk, the milk that comes from a cow!  This is a HUGE victory for Gabby.  After lots of prayers, Gabby has outgrown her disease!

We feel so blessed that her health has been stable.  My heart goes out to those poor children I have gotten to know from the UFAN network who can only ingest elemental formula.  I pray for those little ones and hope for a cure...

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About Me

We are both thrilled to be parents. Our miracle baby was born on August 20, 2008. We are happy to have her in our family and cherish our time with her. I am a chemist at a rocket manufacturer who supplies propulsion for the NASA space shuttle. I got my bachelor's degree from the University of Utah in 2004. I love my job! Gib works at a microbiology testing lab. He is currently attending classes at the University of Utah to get a bachelors degree in biological engineering. We have been married since July 2002. We met at a U of U singles ward. Laura (my cousin) and I had just moved into an apartment together when Gib was assigned to be our home teacher. Needless to say, Gib was a dedicated home teacher. And I didn't mind at all!