Join Danielle Ippolito, Nicole Hoyt, Sarah Cirelli, Carolyn Piassek, Jaclyn MacDonald, Sue Bonnie for a 2 HOUR Heart Pumping Party for little RJ. R.J's Story and Journey with FPIES At 6 months of age you start introducing foods to your child. Imagine for one minute that every food you introduce this poor child is followed by screaming in pain for hours, followed by days, weeks and even a month of vomiting, diarrhea and in our child's case lung issues(he also has asthma and allergies and the three trigger each other). Imagine having to worry that if your child even ingests a cheerio the nasty cycle will start over. Pretty much having to keep an eye on this child every second of every day because if they ingested any trigger foods it could cause a reaction. This is the life of an FPIES family. This is our life! We went months and months and months without a diagnosis and not knowing what was wrong with our child. The cycle started at 3 months of age from an intolerance to milk based formula and it went downhill from there. We finally got a diagnosis around 11 months and that just started our FPIES journey (and boy can it get rocky)! Prior to his diagnosis, he had reactions that would last upwards of six weeks because of having asthma on top of FPIES. R.J. also had pneumonia six times, PRIOR to being diagnosed. Having an almost two year old that can only drink Elecare prescription formula and eat Organic, Vegan Fed Chicken, Organic Puffed Rice and Organic Rice Cakes sound like a simple life, but it is not. We worry everyday about him ingesting something that could cause a reaction or our biggest culprit-CROSS CONTAMINATION! He is on this diet because he can't tolerate anything else, and boy is there times that he wants it (especially since he has an older brother that can eat anything he wants). R.J. is such a happy go lucky child. This is his way of life and he doesn’t know anything else. We got involved with The International Association for Food Protein Enterocolitis (IAFFPE) to give us support and to try and raise awareness for families that might be going through what we went through. We have also been asked to participate in the study being conducted. An FPIES child often looks healthy on the outside. It is what is going on inside and the cost of staying healthy that is debilitating for the FPIES child and family. What Is FPIES? FPIES is a cell-mediated (delayed hypersensitivity) immune reaction in the gastrointestinal system. Reactions are delayed and begin as soon as 2 hours after ingesting a “trigger” food. The reactions are characterized by profuse vomiting and diarrhea. The most common triggers are milk and soy, but any foods (even those thought to be hypoallergenic) can cause an FPIES reaction. In about 20% of cases the child will have such an extreme reaction to a food that they will go into shock and need to be taken to the ER for immediate treatment. At this time few doctors recognize FPIES and parents must carry a letter from the child’s own doctor to present to ER staff. Due to the major lack of awareness, most parents bring their chronically reactive child into the ER or doctor’s office, repeatedly being told each time that their child has reflux, a viral infection, or the stomach flu. When FPIES is finally diagnosed, infants are taken off offending foods and exclusively breast fed or given an elemental medical formula. Foods are trialed one at a time to identify safe foods vs. trigger foods. Why Research? Very little is known about FPIES. Few doctors are able to recognize and diagnose the syndrome. There is currently no cure or treatment for FPIES. While seminal studies report that children may outgrow FPIES between ages 2 and 3, many families are finding that this is not the case for their child. There are a variety of symptoms among FPIES children that are currently not recognized by the medical community as being related to FPIES. More research is needed. You Can Make a Difference The International Association for Food Protein Enterocolitis (IAFFPE) was created to develop in-depth research, provide widespread education to medical professionals and to establish supportive services for children and families affected by FPIES. Once funded, new research can begin at the leading medical centers specializing in FPIES. Please consider a monetary donation to the IAFFPE. Remember when you diagnose an FPIES child, you diagnose an entire family. For more information and to make a donation, please visit www.iaffpe.org. About the IAFFPE The International Association for Food Protein Enterocolitis (IAFFPE) is a non-profit organization whose mission is to improve the quality of life for patients and families affected by Food Protein-Induced Enterocolitis Syndrome (FPIES) by means of education, research, advocacy and support. The IAFFPE strives to be a worldwide leader in FPIES awareness and the issues surrounding this condition. We seek to increase awareness by providing educational r