Tuesday, March 25, 2014

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)
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