Benjamin-FPIES Hello. My name is Danielle and I am here to tell you about my 17 month old son Benjamin. Benjamin is the sweetest little boy you would ever meet, and looking at him you would think nothing is wrong. From day 1 we knew something was wrong with Benjamin, he was refluxing in the Hospital and lost almost 1lb. When we got home his reflux was severe and he was throwing up 2 hours after eating. He was also severely bloated and cranky. He hadn’t regained birth weight by 2 weeks. That’s when the pediatrician switched his formula, put him on reflux meds and had a GI Scan done. That showed he was refluxing to his Esophagus. Well, now we have early intervention coming in at 4 weeks to help with reflux. But nothing has changed, he was still bloated after 3oz, not sleeping and screaming in pain, eczema from head to toe. His therapist recommended at Amino Acid formula, his pediatrician agreed and at 2 months he was out on the amino acid formula. Things drastically changed within 3 days. Pediatrician got him into an Allergist at DuPont. They DX (diagnosed) him with Non-IgE Mediated good Allergy. Which meant nothing at that point. Well after being on the amino acid based formula we started getting Chronic Ear infections. Nothing got rid of them, he was also screaming in pain around the clock. We were at Pediatrician almost every day, nurses heard him screaming on phone, eventually the pediatrician wasn’t sure. In March went to ER, got Medivac’d to Children’s for swollen middle intestine and blood in stool. They found nothing wrong. In April he got tubes in his ears at 5 months old and was given an endoscopy. The scope came back clear. That’s when we heard about FPIES. We transferred to CHOP at 8 months to see Allergy and GI, they officially DX him with FPIES and we have been on a great road since. It’s been a long road since at 17 months he can only eat the amino acid based formula product, peas, potatoes, chicken and Blueberries. But he does better every day. We are so thankful to have a Pediatrician who recognized something was wrong and pushed to find answers. Benjamin is my little hero he is truly a strong child who puts a smile on everyone’s face!

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