I'm still almost too exhausted to blog this, after Sunday's events. I started Punky on a multivitamin at lunchtime, and a couple hours later she was writhing in pain and crying.
It was an infant and children's multivitamin powder I found at Whole Foods, thinking that an unconventional, "natural" supplement might be less risky. I mixed it with applesauce and prunes and fed it to her, thinking I'd trial it the same way we're planning to trial foods now. She ate it right up, maybe not even noticing there was a difference.
When she started freaking out as I was trying to get her down for a nap, it didn't take me long to suspect the vitamin. She was arching her back and twisting herself so I knew there was something going on in her tummy. The vitamin was the only new thing she had eaten. I felt helpless, holding her and trying to rub her back and comfort her. I got her settled enough to doze off, even though on every exhalation there was a sad little moan. Then she threw up all over me. By the way she strained and her whole body stiffened when she threw up, I knew we were having an FPIES reaction.
The Mister had to stay home with Boo, so that left me to bring Punky to the ER on my own. She was "out of it" for most of the car ride and threw up a little one time. Getting through triage was a little frustrating. I whipped out my ER letter explaining FPIES and then had to explain that no, it wasn't exactly a "protein" that set her off. I don't know what they thought I was telling them, but she was white as a ghost and throwing up bile every few minutes, so at least they understood something was wrong. They had me wait for awhile before bringing us back to a room. This is where I'm not sure if I should have said something. Normally, if you go into the ER for an allergic reaction, you are brought back immediately. (Sadly, that's experience speaking). So I sat there wondering at what point I should go back to the triage nurse and demand we be let in. My feeling was that Punky was not going into shock. She was awake. Her head was on my shoulder, but every once in a while she would look around at something. So I waited, probably not more than ten minutes.
We got into a room and waited even longer. I found out later that we got there just in time for the 4:00 shift change. The nurse told me there were also "a couple big things going on," at the time, and that was the reason for our wait. Here's where I don't have a clue. Should I have been pushier? In this case, I don't think any harm was done in waiting, but what if it was a more severe reaction?
Luckily the doctor that saw us, had not only heard of FPIES, but she knew both our allergist and gastroenterologist. Whew! She asked me how I would like Punky to be treated. (Yikes! You mean you don't know?) But we got the IV going and Zofran administered to stop the vomiting. Punky was beat by this time. She hardly fought the IV, and she just dozed off in my arms soon after everyone left the room. We were there several hours- I don't know how long exactly. They made sure she could nurse and keep it down before they let us go home.
She's had a longer recovery time, still not feeling well the next day, but some of that may be from her cold. I have to admit that I've been telling people all along that I thought Punky might not have a very severe case with FPIES. We only knew of rice as a trigger, and possibly dairy and soy, but I was hoping she was "one of those kids" who only had a few triggers. With the multivitamin fail, I'm a little lost as to what set her off. Vitamins have so many "ingredients" in them. Some things are derived from corn, but not labeled as such. This particular vitamin had some fruit extracts in it. We have no idea what about it didn't agree with her, and now I'm wondering how we're going to fill in those gaps in her nutrition until we find more safe foods for her.
I have a lot more questions than answers...