Still having no answers from our pediatrician or the ER doctors we took a leap of faith and took him to Northwest Asthma & Allergy. That day we finally got an answer. They performed the prick/scratch test on his back for food allergies, and everything came back negative. We were devastated, we wanted an answer. Another doctor entered our room and handed us a piece of paper that said FPIES and a small description. He said that he just had flown in from a conference and one of their topics were parents from all over were showing up to the ER with their sick babies and a printed out piece of paper with this description…
My husband and I felt some sort of relief that we had an answer but at the same time we were terrified. Northwest Asthma & Allergy referred us to Children’s to see a GI doctor. Carter then had an upper and lower endoscopy, which showed positive for inflammation and an allergic reaction.
Carter was breast fed and that really helped him keep his weight up. At a year old we started him on Elecare formula medical food, which he was able to tolerate. For his first birthday he had a bowl of dairy free raspberry sorbet.
We slowly started introducing foods. It was such a stressful time. We wanted to just keep feeding him the three foods he could tolerate at the time. The reaction his body would go through was heart breaking and very scary. With every reaction it would take Carter over a week or longer for his body to recover. Profuse vomit, very pale grayish skin color, extremely dehydrated, lethargic and horrible mucous diarrhea. A few times we ended up back in the ER to get his fluids up, we felt so bad for him. He reacted the worst to oatmeal, kidney beans, chicken and eggs. After his worst reaction, Carter’s gastroenterologist had recommended we did all of the new food testing with him at Children’s. It made for very long days at Children’s but we got into a great routine and it was nice to have the medical attention right there.
When Carter was 17 months old he had a febrile seizure and was taken by ambulance to the hospital where he stayed for a few days. To me it felt like a huge step backwards with his health. His body had been through so much.
When Carter was 3 his gastroenterologist said that he had grown out of FPIES, we could start introducing any foods at our pace. He did warn us that Carter’s palette would be extremely different than most 3 year olds, and he warned us that Carter knew he was different than other kids when it came to food and what he was able to eat. We met with a nutritionist at Children’s that helped us and Carter with ways to get him to try new foods and not be scared.
Carter is now a 7 year old healthy awesome kid. He does have some anxiety issues trying new foods and is a picky eater. He also has some
GI issues that he has learned to deal with at school and playing sports.
This foundation & website is absolutely amazing. When Carter was diagnosed, my husband and I felt so lost not having any answers or guidance, or absolutely anyone who had been through this before.
Page published: Feb. 27, 2013. Copyright © 2012,The FPIES Foundation