Our Story

I want to share our story so that it might be of some help to someone else who is experiencing something similar. My son was born three weeks early, perfectly healthy with no health problems at all. He was exclusively breastfed and at about one month of age we noticed that he was extremely gassy, not sleeping well, had eczema on his face, and had mild acid reflux. Doctors thought this was probably a milk protein intolerance and advised me to eliminate dairy from my diet. Dairy was eliminated and we saw a slight improvement in symptoms but they never completely went away. At 4 1/2 months of age we were advised to introduce rice cereal. This was earlier than I had done so with my older daughter but my son seemed to still be hungry and the doctor said he may be ready for more food. The first couple times we gave him the cereal he only ate a bite or two and was not at all interested. We waited a couple of days and the next time we gave him the cereal is when we experienced our first FPIES reaction. Almost exactly two hours after ingesting the cereal, I hear my son crying over the monitor and it sounds like he is choking. When I run to check on him I find him vomiting profusely. He continued to projectile vomit for two hours and in between vomiting he lay limp and lifeless in my arms. We immediately called a nurses hot line that assured us we did not need to go to the Emergency room that it was probably a virus and to be sure and keep fluids in him. After two hours of vomiting he finally fell asleep in my arms and when he awoke the next time he wanted to eat and appeared to be fine. We scheduled an appointment with a doctor the next morning and after hearing our story she assured us that it couldn't have been the rice cereal and that it was probably just his acid reflux or a virus. She advised us to continue with the rice cereal. I was shocked and confused but tried to reassure myself that she was probably right.
One week later we decided to try the cereal again. I was too nervous to try rice cereal again so decided to to try oatmeal cereal. The same exact reaction begin two hours later. We decided to see a different doctor but was told the exact same thing. They felt it was his acid reflux and wanted him to take a prescription for reflux and also advised me to reintroduce dairy into my diet. I left feeling even more confused and feeling like I knew it had to more than acid reflux! I chose not to give my son the medicine prescribed and decided to wait on any other baby foods until a later age. At six months of age, I begin to introduce fruits and vegetables and saw no reactions besides the occasional fussiness and reflux that had always been present. We stayed aways from all cereals and I continued to breastfeed him.
At around seven months I decided I would try to give him a rice snack because he was so interested in table food but still had no teeth and I wanted something that would dissolve easily. I was hesitant to give him a rice snack but because I had been assured by the doctors that he could not have a rice allergy, I decided to let him try it. He loved it and I was so excited for him to have something to snack on! Until two hours later when the vomiting began. The same reaction began and this one caused him to vomit to the point of bile and he became completely limp and unresponsive. We rushed him to the emergency room, not even buckling him in his car seat. I held him the entire way there, just praying over and over again, feeling helpless as my little son lay in lifeless in my arms. After a three hour wait at the emergency room we finally saw a doctor, and of course at this point he was beginning to come back around. The doctor seemed to think he was fine and that it might have been a virus. After three reactions I knew it had to be something more.
This is when I begin searching on the Internet and found FPIES. I quickly learned that it is so rare that very few people in the medical field are even aware of it. I researched and found an allergist in our state that was familiar with FPIES and we scheduled an appointment.
That brings us to today. We have now received an official diagnosis, went through skin prick tests and patch testing and found that my son son is allergic to rice, oats, eggs, and most likely dairy, soy, wheat, and barley. He is currently nine months old and is still breastfed and eating only fruits and veggies. As we are approaching a year old I know his diet will be changing and so this where our adventure begins. Learning what foods are safe for my little boy to eat and finding creative ways to cook them.
I now realize that the reactions my son had are considered life threatening shock reactions and that he more than likely needed an IV becuase of the amount of fluid he was losing. I also know that this is something that he should outgrow but the age at which he will do so is unknown. We are hopeful that by age two to three all allergies will be outgrown but we are also aware that this is not always the case. I am feeling more confident in knowing that he has this and what needs to be done in case of future reactions but also feel overwhelmed! I am so thankful for my sweet little guy and the support of friends and family that we have!