The symptoms fall into two categories: acute symptoms, which are the violent reactions that tell you something is definitely wrong (vomiting, diarrhea, blood or mucous in the stool, foul smelling stool, dehydration, lethargy, shock, weight loss, failure to thrive, hypothermia, hypo tension, abdominal distension, etc.) and then there are chronic symptoms that if you didn't know to look for them, would appear to be just an ill child or one that is "fussy." Chronic symptoms include poor sleeping habits (not just your regular 2-4 wake ups a night, but for us 10+ times each night for MONTHS on end). Chronic hiccups. Eczema type rashes. Sweating. Crying uncontrollably for no apparent reason. Arching her back in pain/discomfort like something is wrong with her stomach. Stomach distension. Moody/irritable. Many of these symptoms are easily overlooked. We didn't notice for months that something was wrong, even when Brook was reacting to her trigger foods through my breast milk.
There are hundreds of blogs and stories from families trudging down the FPIES journey. Some are more horrifying than others, some will make you cry, some will make you laugh. One thing they all have in common? We want people to know what we are all going through, to understand and be empathetic to the challenges we face. We want your support in helping FPIES children and their families have their stories heard.