And the official diagnosis is....

....FPIES to rice and intolerant of bananas and apples.  Rice has been her only full-on FPIES trigger so far.  The Dr said we will do an in-hospital food challenge with rice when she is 4 years old (IV in place).   Until then, she is to have NOTHING that contains any sort of rice...we will be making our own baby food as as many companies use rice flour as a filler/thickener.  She technically could have a full-on reaction to even a trace amount of rice...so even if she finds a grain of rice on the floor and eats it (I better start cleaning better...yikes, Cody gets rice everywhere)! 

The dr also gave us what's called an "ER letter".  Brynn will have one of these with her where ever she goes. FPIES is fairly rare and a lot of dr's don't even know about it.   The ER letter basically says "Brynn has FPIES, this is what FPIES is and this is what you need to do to treat her".  If she ingests something and starts to have a reaction, he said we need to immediately bring her to the ER to begin an IV.  Daycare will have direct orders to immediately call 911. 

One thing the dr said that really stuck in my head was that a lot of people look at FPIES as less severe then a normal food allergy (which they could go into anaphylaxic shock).  It is JUST AS SEVERE.  She is basically having an ana reaction....but it's in her gut.  It still can be a life-threatening issue if proper precautions/treatments are not taken.   

So, we will be starting food trials with her.  A trial will consist of having 1 food (starting with about a teaspoon) and gradually increasing it for approximately a week (or longer).  If no reaction, YAY--we have a safe food! We have trialed bananas, apples and squash so far.  I didn't give squash a fair shot, so that will be on our list to try again.  Bananas caused tummy issues (up all night screaming and arching her back etc) and apples caused a really bad rash on her bottom (almost looked like hives?) so they will also go on a try again later list.  HOPEFULLY, we will not have any more foods that go on the full-on FPIES list. 

He was impressed at how much weight she has gained recently (since we switched to formula) and she is growing like crazy now!  I asked him about her horrible screaming fits she used to have (the totally inconsolable ones for long periods of time), and he said it definitely could have been a sensitivity to what I ate (probably one of her trigger foods).  Being it wasn't directly ingested by her, it wouldn't cause an FPIES reaction. 

So we have a lot of label reading to do, but I'm praying that we have only this 1 trigger food and that she will grow out of it soon. I have many mixed emotions going on right now.  I'm happy to have the diagnosis after only a few months of suspecting it--not everyone has that same luck.  I'm sad and scared for my baby girl. I don't EVER want to see her have a FPIES reaction EVER again.  Poor thing.  But, we have the support of our family and friends and an allergist who is familiar with FPIES...and some wonderful moms out there who have been leading me into the right direction, so I'm confident that we can handle this with ease. And again I'm praying praying PRAYING that rice will be the only trigger food.