The last couple of months have been full of ups and downs! I knew that squeezing in so many food challenges/trials over the holiday season was going to make things a little extra-stressful. What I didn’t count on was the confusion and uncertainty that would result.
Apparently we were spoiled by all of the vomit we experienced during E’s first two years. Sure, vomit is gross and messy and it’s certainly hard to watch your child projectile vomit (especially in the car). However, the vomit was a pretty clear sign that E was having an acute reaction and that the food was clearly not safe for him. Lately I’ve actually been wishing for vomit. I know, it sounds crazy, but I just want to know for sure if E is having a reaction. Instead we are seeing a lot of new an ambiguous symptoms. Just when I thought we finally had an understanding of FPIES.
First we had the weird symptoms during the dairy trial, enough that we decided to proceed with caution and retrial after the holidays. Then we went right into the rice trial, which seemed to go really well – 11 days with no symptoms! We called rice a pass and moved on to oat. E’s oat challenge was the Monday before Christmas. The first day at the hospital went well and we managed to get through all of our multiple, food-intense Christmas celebrations without any problems. Then on day 12 (when we thought we were home-free) E started to have a slight rash on his stomach and around his mouth. It was enough for us to notice but not enough to be overly concerned. After all, the dry winter weather has been wreaking havoc on my skin as well. But I wanted to be really sure. So I pulled oat for a couple of days and waited for E’s skin to clear up.
Rash under E’s belly button on day 12 of oat trial.
Almost a week went by before both this skin and our schedule was clear enough to retry oat. Then my dad was rushed to the hospital and I spent several days with him in the ICU followed by immersing myself in my family as we all came to grips with the loss of such a special person. During all this, poor E was shuttled between his various grandparents’ houses and I was certainly not in a place to start a food trial. So another week or so went by.
Finally, I was ready to take on the oat trial again. I actually convinced myself that it was going to go smoothly and that it would help me to feel better when oat was a pass. I really needed a win, so I went for it. I gave E ¼ cup of baby oatmeal in the morning. We had already spent so much time working up to a full serving without any major issues so we just picked up where we left off. We made it through the “vomit window” with no incident. Then, in the afternoon, about 5 hours after he had the oats for breakfast, he stopped playing with his cousin to come to me and tell me that he his “tummy hurt.” This was a really big deal because he had never, ever said anything like that before. Part of me was so excited that we were finally at a point where he could tell me what he was feeling. Alleluia! And part of me didn’t believe him. A tummy ache is a pretty abstract concept, after all. How could I be sure that he meant what I thought he meant? And, besides, there wasn’t really anything I could do about a tummy ache. I offered cuddles on the couch but he just wanted to go back to playing, so I figured it couldn’t be too bad and we moved on with our day.
He ate dinner just fine and was acting normally. I didn’t really give the tummy ache or the oat trial much more thought until bedtime. He had a poopy diaper that was a little more gooey than I would have liked, not diarrhea, just a little off. And he seemed to be bothered by the baby wipes, though there wasn’t any visible diaper rash. But the most concerning thing was the beginning of a rash on his belly. Ugh.
I discussed my concerns with Jonathan, who had to work late and didn’t get to see any of the actual symptoms. He suggested that we do another day with oat, just to be sure. We had always used vomit as our proof of a fail, and we still didn’t have vomit, so it seemed like a good plan.
Well, the next day it was clear that something was not right. E had woken up overnight and was whiney. He was easily soothed and was happy to go back in the crib after a couple of minutes of cuddling. But it was odd, he doesn’t usually wake up overnight unless something is wrong. In addition, the rash on E’s belly had gotten worse, his poop was a little more gooey, and he now had the beginning of diaper rash. After the second day of oat he also had middle of the night waking and worsening belly and diaper rashes. That was enough. We decided this was a reaction to the oat.
The belly rash returns.
I was depressed. I really thought E was on his way out of FPIES but it was clear that oat still caused some problems. I’m a little comforted by the lack of vomit and the fairly mild reaction despite a large serving the food. It means I don’t have to be quite as paranoid, but we’ll still be doing our best to avoid oat, which isn’t too difficult to do.
The day 12 reaction to the oat got me thinking, maybe we better recheck rice. We had only done 11 days of rice because the oat trial started on what would have been day 12. So, just to be safe, I decided to confirm that rice was a pass. We waited about a week for every last bit of the diaper and belly rashes to go away and got ready to start rice again, which E hadn’t had since the rice trial about a month ago.
I told E he was going to have rice cereal for breakfast. He was not happy, “No mommy, don’t want rice.” What? He always wants to try new food. We went back and forth a couple of times,
“You don’t want rice?”
“No mommy, no rice”
“Why don’t you want rice?”
“I algees mommy!”
Well, that just about broke my heart (and reassured me). Apparently all of the explaining I did about his allergies had gotten through. But now I had to explain that it was ok try food sometimes if mommy could be there to watch in case he got sick. He didn’t seem convinced but after one small taste, he gobbled up a full serving and wanted more, which I gave him.
He ate 2-3 servings of rice cereal for about 4 days with no problem. Then on day 5 the belly rash returned along with gooey poop and diaper rash. I stopped the rice as soon as I saw the symptoms but he continued to have loose stools and the rashes for another couple of days.
Now I was really depressed. Way to kick me while I’m down FPIES.
I’m not too sure what to make of all this. We have an appointment with E’s allergist coming up and I’m looking forward to getting her take on all of this. There is a clear connection between the symptoms and the food, but this is not E’s typical reaction. Are we moving into a new world of more chronic-type reactions? Is this an indication that E is outgrowing FPIES? Is this not even FPIES any more?
I’d love to hear from other mom-experts. Does this pattern of symptoms sound familiar? Does it sound like a chronic reaction to you?
We’ll be avoiding oat and rice until further notice. I’m really ready for a victory and planning to restart the dairy trial in the couple of days. Please keep your fingers crossed that the dairy trial brings the good news I’ve been hoping for.