Dorotea's story
Dorotea was diagnosed with Food Protein Induced Enterocolitis Syndrome (FPIES) at 4 months of age. This year research funding from AIFA is targeted at finding out more about this condition to help children like her. See www.allergyimmunology.org.au/projects
"To say that having a child with FPIES is stressful is an understatement," Dorotea's mother Amanda writes. "Getting help for these children is very difficult as the condition is rare and even many paediatricians are inexperienced in the management of it. Dorotea's first admission to hospital was after a severe reaction to soy formula. As is often the case, it was misdiagnosed as a viral gastroenteritis.
The main symptom of FPIES is profuse vomiting, which can be accompanied by pallor, floppiness, hypotension and hypothermia. The FPIES reactions may be triggered by a variety of foods, although the most common triggers in Australia are staple foods such as cow’s milk, rice/oats, soy and eggs.
Amanda explains that "the diagnosis of FPIES is just the beginning of what is often an incredibly exhausting few years. Because there is no testing available to ascertain what foods are safe, each new food needs to be trialled separately. We long to see this condition better understood so that families do not have to live with the exhaustion and uncertainty that marks our weeks."
Read more …Dorotea's story