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 www.fpiesday.com!

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:(

FPIES Confirmed!

He have seen many Doctors with Ryry since first finding blood in his diaper at 3 weeks of age.  We have heard all kinds of diagnoses from stomach virus to intolerance to allergies.  We have heard "I suspect it is FPIES" and "I'm leaning toward FPIES" and "I don't want to call it FPIES but...." well today we heard the words "Have your heard of FPIES?"  I nodded.  "Your son without a doubt has FPIES."  I feel validated!  Getting a 3rd opinion this time from a Doctor knowledgeable in FPIES was by far the best decision we have made!  We also discussed some of Ryder's other symptoms that may not be FPIES and it was determined the he also has severe reflux. So the diagnosis is finally in his charts  FPIES with Severe Reflux!

The Plan:  For now we continue with what we are doing for food.  Basically get most of his nutrition from Elecare and the rest is bonus!  We are being referred to an allergist at Boston Children's that know FPIES.  When we are ready to trial foods that he has reacted to, probably not until after age 3, he will most likely trial that food while at the hospital. He is also now on Zantac, we will see how that goes.  We are avoiding the following: soy, dairy, poultry, raspberries, coconut, eggs and carrots.

Ryder at 23 months:
*and yes, still in size 4 diapers
* in mostly 18 month clothes
*size 6 shoe
*walking! RUNNING!!
*is taking about 25 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 Sunbutter Bars
*laughs and smiles a lot when he is feeling good
*sleeps horribly unless in bed with momma:(
*still very ticklish!
*still 17 teeth
*weight  25pounds 8.5 ounces
*height 33 inches
*head circumference 19 inches
* really loves his binkie, he even tries to eat with it in his mouth
*signs more and all done
*now says bye a lot and even says wuv oo (love you), fank woo (thank you), peee (please), Kicky (Mickey), Day Day (JJ), binkey, baba, Auntie, Momo (Molly, our friend daughter), Oa (Noah), Popy (Popsie), Memaw (Gramma)...and so much more!
* Loves Mickey Mouse and Dake (Jake and the neverland pirates)

Feeding Tube Awareness Week....

As the week is almost over I wanted to remind you that we sometimes love a tubie.  I tubie refers to a child that has a feeding tube.  That was us once and may be again.  With Ryder's illness he sometimes needs some help with his nutritional needs.  He is still fed 28 ounces of a special formula everyday even though he is almost 2.  Even with the formula he is not gaining weight as he should. I the last year he has gained less than 6 pounds and in the last month he has lost 6 ounces meaning he has gained NOTHING in a month! Part of this is because if you look at the rest of his diet its just that "diet" food.   It was a huge thing for us yesterday that he ate an entire Peanut Butter and Jelly sandwich for dinner (and I believe he had some for lunch).  So are we loving a tubie right now?  No but we have been and still might be again.  Please don't stare...ask questions!  Most tubies and their parents are more than happy to answer your questions if you are being curious don't be mean!  These children face enough challenges. 

In the hospital after getting his NG tube (3/5/2013)

Smiley boy at home

How we kept his tube attached when not being used

Tubie Tubbie!

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