Thursday, May 13, 2010

Getting a Diagnosis

In March, my husband and I took Brendan to see a pediatric allergist who gave him the FPIES diagnosis. Unfortunately, she was unable to offer more than the diagnosis. After several phone calls to the allergist's office, I was desperate for some answers. I read up on the limited FPIES information on the internet...and thought there had to be a better way. FPIES is described as a rare disorder...although there are so many affected children. FPIES is being misdiagnosed. Thankfully, we found a local allergist who is familiar with FPIES. My son will undergo atopy patch testing and we will use rice cereal and apples as a control (since we know he reacts to both). I am hopeful that we will be able to find something Brendan can consume and challenge orally as a result. In the meantime, I will document our experience so that we can a) help other parents and children and b) find a way to educate the medical community. If anyone would like to share their experience or know of an FPIES doctor, please let me know. My goal is not only to help my son but to also help other children and parents afflicted by this syndrome.

FPIES episode #2 and #3

Upon our return from Texas, I primarily nursed Brendan. He had two more episodes in February. I fed him apples the second time and rice cereal with pears the third time. Each subsequent episode was worse than the first. It was the typical time frame of four hours, followed by projectile vomiting until there was nothing left in Brendan's little body. I would lay him on my chest (for fear of him choking on his vomit) and he would dry heave for several hours after.

During the third episode, Brendan seemed lethargic and confused before the vomiting even started. In the days following, I searched the internet for anything related to "vomiting after consuming rice cereal". This is when I came across the FPIES articles. After reading several articles, I was convinced this is what my baby had.

Wednesday, May 12, 2010

FPIES episode #1

We flew down to Texas to visit with family over the holidays. Brendan was five months old at the time and had consumed rice cereal at least six times successfully. On January 2, 2010, Brendan had his first FPIES reaction. Four hours after eating rice cereal, Brendan had projectile vomiting and diarrhea for two hours. I like to think of myself as a "seasoned" mom of four children but my mommy instinct told me something was not right. My husband thought it was a stomach virus and my mom thought it was due to teething. I knew something was wrong and wanted to go to the ER. Ultimately, we waited and when the vomiting ceased, I nursed my son. He seemed lethargic and out of sorts but still flashed his little gummy smile. The vomiting stopped but the diarrhea lasted several days. It was slimy and mucousy. We thought that was the end of it.