FPIES, What PIES?

Kwash has officially failed pears. Now we are on two week gut rest, again. We have had so many fails it is mind blowing. The Feeding Team wants her to be evaluated by yet another doctor. They feel she has FPIES... Come again? Food Protein Induced Enterocolitis Syndrome. Now there are two avenues when it comes to FPIES.

You have your "Classic" acute symptoms:
    "The classic pattern of an FPIES reaction is when a healthy infant or child develops symptoms    shortly after eating a food. There is a characteristic delay of 2-3 hours before onset of severe and repetitive vomiting and eventually diarrhea. The child may appear very ill and sleepy (lethargic), and may become pale or blue. When evaluated by a doctor, he/she may be found to have low blood pressure, seem dehydrated, and have blood tests that mimic infection (sepsis); which in some cases can lead to sepsis-like shock. Many infants who are eventually diagnosed with FPIES are initially suspected to have a severe infection or sepsis." (FPIES Foundation)
 
Then there is the ever tricky "Chronic" reactors: 
   "The second common pattern of FPIES reaction symptoms occurs when infants who are ingesting a problem food (usually milk or soy-based formula or proteins in breast milk) as a consistent part of their diet might experience increasingly severe vomiting, diarrhea, and poor growth, possibly progressing to an illness mimicking a severe total-body infection. Please note that each child is unique and your child may experience their own range and intensity of these symptoms." (FPIES Foundation)

    The range of symptoms are as follows: sleep disturbance, sensory issues, blood/mucus stool, acidic stools, congestion, limiting food intake, fussy/irritable. Fun right? 

None of it is fun. Doctors are unaware of the acute reactions let alone the chronic, which has even less medical date to support a diagnosis. 
 
Fortunately (or unfortunately) Kwashi has never had an acute reaction. But her chronic issues have left her hospitalized twice for dehydration due to feeding refusal. The first time she was barely three months old. She was drinking almost nothing for a week. She had chronic green, smelly, mucus filled, diarrhea at least 6x a day. She slept poorly. Upon taking her in and the staff placing an NG tube we noticed how utterly uncomfortable she was while being tube fed. Her doctor told us she just had difficulty swallowing and that many preemies in the NICU did. I questioned the staff about her poop, reflux, and her behavior for three days. Nothing was done test wise to figure out her issue. None of the doctors would look at her poop. Interestingly enough the nurses, PT/OT, SLP, all said there is something very, very wrong. I got the heck out of the hospital for a second opinion which unfortunately has sent us down another dead end path.