There are so many feelings that I have right now. This seems like a nightmare.
My son, Luke, is an 18 lb, very healthy 5 month old. Exclusively breast fed until his 4 month check up. My pediatrician felt the burden of keeping up with my robust 4 month old was going to get too difficult for me. He recommended that I slowly introduce solids to his diet. He was big and healthy enough to move up to the next level of feeding. I was over joyed and excited about the fun of feeding my precious boy new foods. We started slowly. 3-5 days for each food before introducing something new. He did great for about a month. Then one night about two hours after giving him oatmeal mixed with powdered formula and green beans; he vomited. He was always a big spitter, but this was for the records! Then he kept going... Vomit....vomit....vomit. Vomiting for about a half hour, he suddenly felt cold to the touch and was pale as a ghost. We were so worried. I rushed him to the ER and he got limp and colder as I checked him in. The guy at the reception saw him changing and called the ER staff saying "you gotta get this baby back!! He is cold and white!!" They rushed him back and gave him IV fluids. Suddenly, he was fine. Pink and smiling. By then they had called the paramedics to rush him to children's hospital. When the paramedics got there, the ER Doctor said, " I swear he didn't look like this an hour ago!!" After endless GI images and a very traumatic night, we were released with the diagnosis of "some virus."
What bothered me was no one believed me when I said he felt cold to the touch. Like a cold countertop. A virus wouldn't do this.
Fastforward to two weeks later. We are on vacation in Charleston, SC. I hadn't really fed my little guy anything solid since the incident. I decided it was time and gave him oatmeal mixed with formula and squash. Two hours later~ he vomited. I thought, no... This can't be. It must just be spit up. But, it kept going. I was still in denial. I called my pediatrician nurse line. Surely, I didn't need to go to the ER again! I answered the question and then the nurse said, "what bothers me is the temperature and his color, it puts him in a category of anaphylaxis, let me call the attending physician." Then, he turned white and went limp, HE WAS UNRESPONSIVE! I wasn't waiting and I called 911. The paramedics got there and one of them grabbed my baby and said to me "I'm rushing your baby to the hospital now. Do you want to ride with me?" He said it like he was saying "I'm not sure your baby us going to make it yo the hospital." By God's infinite grace, he did. They gave him IV fluids and he was fine. I told the story about a thousand times to about 10 different doctors and nurses. I still felt like they just didn't get it. We got transferred to the children's hospital and I waited all night and day with a healthy, happy baby. What was going on???
What I loved about MUSC in Charleston was he medical team. About 10 different physicians were studying my son and his symptoms. Finally, after endless hours they came back with the diagnosis of FPIES. Now here I am. Scared. Uneducated and concerned. I am so glad I have found this resource. What now????