FPIES?

I'm new around here and was wondering if anyone thought my son's symptoms sounded like FPIES. DS has been EBF since birth and was diagnosed with GERD and food allergies/intolerances at 2 months. I was put on a strict elimination diet and DS was given medication for his reflux. Things appeared to be getting better until maybe the last 2 month and getting progressively worse, almost back to where we started. I just thought he was ready for solids because he seemed so eager to eat them and my diet has not changed since starting the elimination. 2 weeks ago, when DS turned 6 months, we tried rice cereal (brown rice that I milled to avoid cross contamination). The first day DS basically refused to eat it and acted like he was choking if any got near his mouth. The second day he did a little better and ate several spoon fulls before refusal. A few hours later he started to vomit large puddles which lasted into the night and the next morning. He also had blood and green mucous in his stool, was very irritable, had a low grade (100) fever and would not sleep. I took him to the pediatrician who determined he had an allergic reaction to the rice and restricted us both from it and from any more solids until we see the GI. I started to research rice allergy and that is when I came across FPIES. I feel like DS fits a lot of the symptoms on a daily basis and am wondering if he is reacting to something I am still eating via my breastmilk as well. I've also noticed that since the rice fail he is no longer trying to grab my food while I eat...I wonder if he knows food makes him sick or it's just a coincidence. Any input would be much appreciated. Thank you

Original Post

Hi!  And welcome to the group!  I am glad you have found us, but sorry you have to be here. It is so hard to watch our little ones struggle.  What you are describing sounds very much like a classic FPIES reaction to rice.  The other issues you are having with your little guy being reactive to things in your milk can also be pretty common to FPIES.  It sounds like you have some great support from a good allergist.  I would suggest taking some articles to the allergist and/or GI and see what they think.  Here's a link to the FPIES Foundation toolbox: http://www.thefpiesfoundation.org/toolbox.html.  There is an article called "Helpful Articles to bring to your Primary Care provider" that may be helpful to you.  You can also check out the Medical Literature section for addition articles.  I hope you can find some answers.  Welcome!

Thank you!  We actually have not been to an allergist yet because I thought my son's GERD and allergies were under control after seeing the GI, but I guess I was wrong and am now convinced that FPIES is also an issue. I actually don't think we ever reached a baseline and that could by why he is still spiting up/vomiting a few hours after every feeding (I was told that might not go completely away, so I guess I over looked it). The rice was by far the worse reaction, with puddles and puddles of vomit, and the first time I've seen a green mucous stool with blood since starting elimination and working everything out of our systems.

 

We see the GI on Monday and I am optimistic that he will make a positive diagnosis. I'm not exactly where to go from there if he does not...I feel so lost. I would take DS to CHOP in a heartbeat, but do we just go, need a referral from his PCP? And then the waiting game to get in! So frustrating (I know we have all been here and got passed it). I just want a diagnosis so I can say "yes my son has this" and I can research how to help his pain, etc.

 

Thanks again for your warm welcome. I know I am not alone here!

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