JB’s Story 

tzfpiesbabyOne day I was video tapping my sweet girl saying “dada” for the first time, the next day we were in the hospital after calling 911 for the first time. Her body limp in my arms, turning blue, vomiting until there was nothing left.  Regaining color only after the paramedics got to our door in the seconds it took them from my call. I’ll never forget the look in her eyes. She was motionless. The thought of it makes me relive one of the worst days I’ve ever had. Not knowing what to do at the moment of her violently vomiting after waking from a nap, to the point of becoming limp and blue, is every new parent’s worst nightmare.

At the hospital, she was looking around and conscious, but barely moving. They tested for everything under the sun. X-rays, blood tests, had everyone enter the room in full masks and gear due to thinking she had a virus and nothing seemed to add up. I mentioned her eating oatmeal.  I asked everyone that walked into our room, could this be a reaction to the food she had eaten, getting a no from every doctor I spoke to. At one point the surgeons wanted to remove part of her colon and misdiagnosed as a rare colon issue. We were lucky enough that our pediatrician saw nothing wrong with the X-rays, thought that it (colon issue) didn’t add up and fought for us. Fought to not have a quick surgery and give it time. We took that chance. For this we are always grateful. When dealing with issues like this and you are being thrown in so many different directions, you hope for someone to be able to guide decisions you have to make the best way possible.

After the 5 day hospital stay, we then had the longest month of our life. Going to every specialist you can imagine. About this time, she ended up in the hospital again after eating some avocado. Same reactions, this time she never lost color and we rushed her to the hospital. We were told to go see an allergist at that point. This was the last doctor on our list. Within the first 5 minutes, the pediatric allergist said she thought our daughter had a rare food allergy called FPIES (Food Protein-Induced Enterocolitis Syndrome). It didn’t show itself until now because I was exclusively breastfeeding and only just began to feed her real food. She always spit up a bit. Doctors called it “the happy spitter,” because she wasn’t in discomfort or losing weight. On the recommendation of the allergist, I eliminated avocado, grains and oats from my diet and within a week the spit up stopped.

I’m glad we received this diagnosis within a month, although while living through it, felt much longer! It helped tremendously just to get over the “what’s wrong” phase – which can consume you and your partner. That can be the hardest part at times – the unknown. Then you begin your new adventure in trying to figure out the best way to go forward.

We have been doing food trials for 2 years since and have not had an issue (luckily!!!).  We avoid grains, oats and avocado. Currently, we are in the beginning phase of trying to have her understand why she can’t eat a certain food. This is very difficult when dealing with gatherings with friends/families and a toddler. Due to the rare aspect of her allergy, many don’t understand the extent of what we go through. This may be the hardest part. She is the sweetest, smartest, strongest and sassiest 2.5 year old I ever met.  I know she will find a way through this with us, as she has shown understanding way beyond her years already.

tz_fpies

 

The FPIES Foundation provides suggested links to other Web sites as a convenience to you. The Foundation encourages you to evaluate websites yourself and discuss the information you find with your health care provider(s).  Use of our Web site constitutes acknowledgment and understanding by the user that within our Website there may be links to other Web sites that are operated by parties or individuals that are not affiliated with The FPIES Foundation. Read more on our link policy at: http://fpiesfoundation.org/about-us-link-policy/ | The FPIES Foundation

Page published & last update: October 17, 2015. Copyright © 2012,The FPIES Foundation