The verdict is in…

Posted by Courtney Lopez on

As you know we went to CHOP yesterday to see if she has FPIES. (Food Protein Induced Entercolitis Syndrome)  Many people have told me to not assume, not to look into things without a doctor’s advice, and never trust google.. Well, if it wasn’t for all of those things above I would have most likely spent months maybe years trying to figure out what was causing issues for my daughter.  FPIES is NOT well known.  It’s extremely rare and almost all doctors and even specialists are unaware of it.  To think I was lucky enough to be able to find out before we had to go through all those routes of trying to figure out what is wrong – I am feeling blessed.

So very blessed to have this Sweet Baby in my life.   Blessed that it’s not life threatening.  Blessed that it does go away in time.  Blessed that we’re so close to the best doctors for the allergy.  So, very, blessed.

Now we start trialing foods that we think are safe.. Things she’s tried and not thrown up from.  Our journey is just beginning.. it may have a few bumps here and there but we are in the best situation – we have a diagnosis.  That’s the best place to be.  I am scared of seeing her react to food again.. I admit it.. thankfully we have wonderful doctors who are literally holding our hand through the way.  We can either trial new foods on our own and risk running to the ER or trial in the hospital with our doctors.  We just started banana since we believe that is her safest food and so far so good.  So, very, good.

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