Little Dried Up Bits of Evil AKA Raisins

Thursday, August 4 began like any other day, until I found Carter with a box of raisins. We know he can’t eat raisins because his body cannot break them down, but he’s never had a severe reaction. His mouth was full of those little brown things. I knew he had eaten some, but I had no idea how many. And now the waiting game began.

The rest of Thursday progressed without much notice. Friday morning started with a pretty normal diaper. There was one raisin incased in mucous. But that was it. I began to feel hopeful that this was a sign of his body improving and overcoming FPIES. Oh, how wrong I was! We stayed busy all Friday afternoon at my parent’s house.  We headed home around 2 pm and that’s when I noticed the first sign that something wasn’t right. Carter fell asleep in the car and lost all color. His face was pale and his lips were white, not their normal rosy pink. When I took him out of the car, his body was limp and he was hard to rouse. I assumed it was from a long fun filled morning and put him down for a nap in his bed.

He woke several hours later and although he was a little more cranky than usual, the evening progressed normally. There was an increase in his reflux, which we haven’t seen in months, but he didn’t appear to be in pain. He went to bed at 7:30 and slept peacefully until midnight. Shortly after I fell asleep, he began to cry. It was the cry that covered my body with goose bumps, the one that says, Mommy, something is wrong. I went in and found him lying on his side, screaming. His reflux was out of control; he was gassy and seemed to be having waves of severe stomach cramping and pain. He was clammy and cold, and he had that all too familiar reaction smell due to the increase in sweating.

Carter and I were up together for 3 and half hours. All he wanted me to do was rub his back. I couldn’t find a position that was comfortable for him. Every time I tried to hold him, Carter would squirm and wiggle and fight. There was nothing I could do to make the pain better.

The next morning, Saturday, brought a cranky little boy. The mix of disturbed sleep and pain made for a rough morning. We had a diaper FULL of mucous, and 2 more raisins.  Saturday, mid afternoon, Carter’s reaction symptoms took off. He had a screaming vomiting episode followed by a decrease in body temperature. He was 96 degrees and his normal body temperature is always 98.6. His temperature is always as normal as can be. He lost all color in his face and was cold and clammy. He cycled through this pattern all day. He had a pretty good night’s sleep on Saturday night, followed by an almost 4 hour nap on Sunday, his body’s way of trying to recover.

I went back and forth all day Saturday about whether to take him to the hospital, but as he reached the beginning of the downward spiral, he managed to pull himself back up again. It is no wonder that he slept for 4 hours on Sunday, his little body was exhausted.

So what does all this mean? Simply stated, it means that Carter went into the early stages of shock.  He never lost consciousness, but he displayed many of the signs of early shock: excessive sweating, low body temperature, lose of color, rapid breathing and cold extremities. It also means that his reaction to raisins has gotten worse, not better. His body has become more sensitive to these foreign invaders.

We learned something new through this reaction.  The onset of vomiting and shock doesn’t just start 2 to 4hours after the ingestion of a trigger; it can start very slowly, almost undetected and build up to 48 hours later.  Not only is this something new for us, but it is something relatively new in the FPIES world. But it did happen here, in our home, with our little boy.