The verdict is in…

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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.

 

30 Comments

  1. Mom’s always know when something is wrong, and so happy you got a diagnosis. You will get through this even with the trials. Glad bananas are going well!

  2. So so happy that you can breathe a little easier now since you now have an official diagnoses. You’re strong Mama, you’ll get through this 🙂

  3. So glad you found out and many prayers for her. She is beautiful. I love the photos. My son was diagnosed with pyloric stenosis at four weeks of age. I had never heard of it, but googled his symptoms and was convinced he had it and he did! Thank God I was persistent! It is fatal if not treated, but if treated, they are totally fine after the surgery.

  4. Thank goodness you found out about this early. She looks like a very healthy child, and with your watchful eye and the help of these doctors, I’m sure she will continue to be.

  5. I am so glad you were able to get the answers you need to help her and hopefully you can start finding some safe foods for her tummy!

  6. So glad you found out what’s wrong. Does your daughter have many triggers? There’s another blogger {Maria at Change Diapers}; if I remember correctly, her son has it.

  7. You are such a great mama! those instincts aren’t always easy to trust, especially when people tell you not to! Glad you followed through with it.

  8. What happy news! God is so good! May He continue to bless your journey & guide the minds, hands & hearts of the hospital staff as they treat Sweet Baby! Good luck on this trial & error period.

  9. So glad that you got a diagnosis and now you can find out what works for her.

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