Last week I took Jed to the allergist to be re-tested. In about ten days, we hope to start an egg trial for Zac’s FPIES, but we are understandably concerned about doing this since Jed is so terribly IgE allergic to eggs. It seemed prudent to get him re-tested to … Continue reading →
Today we are supposed to be in Atlanta, having follow up appointments with our GI and Allergist. We are not in Atlanta. We cancelled the appointments. It was REALLY hard to make this decision. Darrel and I spend our lives trying to make sure our kiddos have the very best … Continue reading →
This week is just an Anniversary Week for us, and kick-starting it is today – July 17, 2013 is One Year we’ve been the parents of a child in need of an Epi-Pen. Last year on this day, I took Jed to the allergist to be re-tested for his allergies. … Continue reading →
After meeting up with the grandparents (my Mom and the Geek’s Dad) and Mr. Charm, we left to go find some food for me to eat. We were quickly interrupted by a phone call from the allergists office asking if we were okay and where we were. I was a … Continue reading →
Yesterday we had our first appointments with the Atlanta specialists. Coming here was a good decision. I have so much to say about how it went and what I learned, but I don’t have a computer and it is far too much to type on an iPhone. So I’ll just … Continue reading →
Back in December, I mentioned that we were going to Travel For Medical Care. Next Tuesday is our Big Day. We will see a new GI and a new Allergist on Tuesday, and hopefully get an appointment with the nutritionist they both use. We picked doctors in Atlanta, mostly because … Continue reading →
Yesterday and today brought three more diapers I wanted guaiac-ed, so this afternoon I drove the kiddos the 50 minute, 35 mile drive to our pediatricians office. They tested positive. Not even ‘trace’ – just flat-out, full-fledged “positive” (which is a negative as far as I’m concerned). Combine that with … Continue reading →
I nursed Mr. Happy three times. Then he started reacting. So I stopped. Bummer for both of us. However, I knew my system wasn’t completely cleaned out, so it’s not really a surprise. I had just hoped that it was cleaned out enough that he would react only as badly … Continue reading →
Today was the first day of our whole family elimination diet. I think I jumped into this before I was ready… When I arrived in the kitchen this morning to make breakfast, I realized the only pineapple we had was in the little tubs. Okay, no problem, those will be … Continue reading →
This morning I called both the pediatric Allergist and the GI doctor. I wanted to tell them about Mr. Happy’s increasing reaction to the Neocate, and our experiment this weekend with dilution. The GI was in labs all day, so his nurse (who was barely comprehendible) took a message and … Continue reading →
FPIES stands for Food Protein Induced Enterocolitis Syndrome. It is a rare food allergy that affects the gastrointestinal system. Reactions are delayed onset, usually 2-4 hours after a trigger food is eaten, but sometimes even longer than that.
Children with FPIES have symptoms that range from severe (violent vomiting to bile and hypovolemic shock) to mild (bloody diarrhea, sleep disturbances).
There is no test for FPIES. It is diagnosed by clinical observation and ruling out other possibilities.
There also are no tests to determine trigger foods. FPIES parents must simply feed their child a food, then wait to see if they react.
Find out more: Click on "FPIES Links" at the top!
Thanks for stopping by! My name is Carrie. This is where I talk about all things FPIES, Fructose Malabsorption, Food Allergies, Real Food, Recipes, and MCAD. Click on the photo for more on my family and what this blog is about, and thank you for visiting! Be sure to subscribe so you never miss a recipe! (Don't worry, your email is safe with me.)