Our FPIES story started out like so many others. My son Brendan was exclusively breastfed until 6 months of age and then we introduced rice cereal. He tolerated it in large amounts for the first two weeks before he had his first reaction. It was the holidays and we flew to our hometown to spend time with family. My son ate rice cereal and within four hours, the projectile vomiting and bloody, mucousy diarrhea started. I have never seen anything like it and I have four children! He had shock symptoms and it took several days for him to recover.

Now, I will fast forward to the present. My son is 2 years old and is still mostly breastfed. He has a very limited diet of russet potato, bananas, and almond milk. He is a very delayed reactor as it often takes up to a month before he shows reaction symptoms. He also has secondary conditions as a result of FPIES. He is severely anemic and has to have IV iron infusions at our local hospital. He has an oral food aversion, vitamin deficiencies, gross motor delays, speech delays, subclinical hypothyroidism, low glucose levels at times, chronic inflammation between reactions, you name it, we’ve dealt with it in some capacity. Brendan has spent most of his life visiting hospitals, specialists and being poked for IVs or lab draws. We have flown all over the country searching for answers from various allergists. I would travel to the ends of the earth for my son…even if we only learn one new detail. It is still worthwhile. Because we have been told by many that there is very little to offer Brendan in regards to treatment, we have spent the last three months caring for his medical needs mostly at home on our own. However, we have also met some amazing doctors along the way who genuinely care and personally struggle with the fact that FPIES treatment is limited at this time.

FPIES has robbed our family of so much over the last two years. It is the most isolating and terrifying journey I have ever encountered in my life. Through so many tears, worries, and constant battles, our family has also become adamant about two things. Together we will survive FPIES and we have resolved to make a positive difference for other FPIES families and the medical community. I have learned more and advocated for my son in ways I never thought possible. I have drawn strength and energy from places I never even knew existed within me. My hope is to share my knowledge, resources, and experience so that other families do not have to live with this chronic illness feeling alone and powerless. I have met some amazing moms through this journey and we draw from each other’s experience and rally around each other in the good times and bad. We understand how important it is to hear the right words at the right times. Empathy and compassion go a long way. I am extremely proud of the founding members of The FPIES Foundation and feel honored to be working with each of them. I also embrace the opportunity this foundation has to offer through collaboration with present and future FPIES families!

Follow the Incarnato Family:
Brendan and FPIES

 

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Page published: June 19, 2012. Copyright © 2012,The FPIES Foundation