Tuesday, October 14, 2014

Happy Global FPIES Day!!!!!

Today is Global FPIES Day!  If you had asked me 2 years ago what FPIES was I would have no idea but today we live it.  Two years ago we had a very sick six month old.  We were finding blood in his diaper, he would sit up a lot and wasn't really gaining weight.  We were at a loss, we were scared and we were desperate for answers.  The same stomach bug was not effecting our baby over and over.

Then he was hospitalized:(  He had sever dehydration, C-diff and was losing weight.  We spent the weekend in and out of the ER before he was finally admitted and we were first seen by a GI Specialist.  When in the hospital it was decide he would be put on an Elemental formula.  After 5 days and several different bands and flavors of formula were tried, all of which were refused, he was sent home, still on Prosobee Soy Formula.  We spent the weekend with a very sick and unhappy baby.  Tuesday we had our follow up with the GI in his office.  The doctor walked into the exam room took one look at Ryder and said "pack your bags".  Ryder was readmitted for an NG tube and elemental formula.  
A few weeks later a friend sent me a link to an ABC News story and said this sounds like Ryder.  I brought this up to his GI and it was quickly pushed off.  The GI's reasoning was Ryder doesn't usually throw up except with Soy so he cant possible have FPIES.  After reviewing his case with his PCP and a local Allergist we found a new GI.  On March 25, 2014 after almost 2 years and with our first visit to our current GI we finally herd the words..."Your son without a doubt has FPIES".  While this was a bitter sweet moment we now knew the beast that had made our boy so sick for his whole life and we could deal with it!
The problem with an FPIES diagnosis is so many practitioners have never heard of it!  It is very difficult to diagnose as it is basically a diagnosis based on a cluster of symptoms as there is no test that can be done.  Although it is an allergy traditional allergy testing doesn't work for FPIES.  For more information or to donate to FPIES research please visit!

Ryder at 30 months (2 and a half):
*finally in size 5 diapers
* in mostly 24 month clothes
*size 7 shoe
*is taking about 20 ounces of Elecare Jr formula from a bottle and water from a sippy cup!
*eats a variety of fruits and veggies, puffs, Cheerios, pasta, graham crackers, Ritz crackers beef and pork too! Seems to like the Enjoy Life Chocolate Sun butter Bars, but mostly just peanut butter and jelly sandwiches on whole wheat bread and bananas
*sleeps horribly even when in bed with momma:(
*still very ticklish!
*still 17 teeth
*weight  30 pounds exactly
*height 34.5 inches
* still really loves his binkie, he even tries to eat with it in his mouth
*His vocabulary has completely exploded ...when he takes his binkie out
* Loves Mickey Mouse and Jake and the Neverland Pirates
* just finished a 5 week coarse of anti-biotics do the c-diff again:(

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