Our feeding journey with Jacob has certainly been a long one and has included its fair share of twists in the road but we have, fortunately, been coasting for the past few months. His belly troubles have settled with the right medication, he loves eating, and we know what foods to avoid. Whether that’s because he’s starting to grow out of some of his food challenges or because I’ve been hesitant to introduce too many new foods during COVID, I think is anyone’s guess (it’s probably the latter…), but either way, we’ve all really enjoyed how well he’s been feeling and watching him get so much joy out of eating, which was so difficult and caused him so much discomfort for the first 6 months of his life, is all the light at the end of the tunnel I could have asked for.
That being said, we always proceed with caution when introducing any new foods, and we know there are other foods that aren’t necessarily FPIES triggers but do cause him some discomfort. After adding carrots to the list of probable trigger foods this week, I thought it might be helpful to share a bit more background about the process of Jacob’s earliest symptoms and FPIES diagnosis.
First Symptoms
When Jacob was 5 months old, his pediatrician gave us the green light to start solids. After months of silent reflux and exclusive breastfeeding, we were both ready for this big step. I know there is some controversy around this, but we decided to start with rice cereal since it was bland enough that his reflux likely wouldn’t be an issues and we were hoping to be able to use it to thicken the bottles he was refusing to take. Well, that plan changed quickly. I gave Jacob a small bowl of rice cereal around dinnertime and about 4 hours later, he woke up absolutely covered in vomit. Not like baby spit-up vomit….like actual adult vomit…and when I picked him up out of his crib, he kept vomiting for another hour. He was soaked, I was soaked, his crib, the floor, everything. My tiny baby had nothing left in his belly to come up and he was so scared, my heart just about broke. And I was terrified. Was he choking? Did he choke before he threw up? Did I feed him too much? I didn’t know what to do. After a sleepless night and resisting the urge to Google all of the horrible things going through my head, I put the millionth call I had made in to his pediatrician. She told me she thought it might be an allergy and recommended we try oatmeal instead. So, after taking a break from solids for a few days, we tried oatmeal. And the same thing happened again.
Allergy Testing/Diagnosis
After talking the rice and oat reactions through with Jacob’s pediatrician, she felt confident enough that he had FPIES that she referred us to both Allergy and GI doctors for testing and evaluation. The tough thing about FPIES diagnosis is that there is no test for it, and the trigger foods don’t show up on traditional allergy testing. By the time we saw Allergy and GI, Jacob had reactions to sweet potatoes and pumpkin too, so they diagnosed him at that appointment when he was 6.5 months old. It was a huge relief and also felt like a huge mountain we had left to climb – every food we were going to introduce came with the distinct possibility of another reaction and that freaked. me. out.
Follow-Up and Next Steps
At this point, Jacob’s trigger foods are rice, oats, sweet potato, pumpkin, tomatoes, and carrots. He also has a dairy intolerance that he hasn’t grown out of yet so we’re going to be going down the traditional allergy testing road for that at some point. Other than avoiding his known triggers and keeping a detailed log of any new foods and reactions he has, there’s not much else we can do. When he’s about 3 years old, we’ll talk to his Allergy and GI doctors about food challenges for the things we know he can’t tolerate now, but that will include admissions to the hospital in case he hasn’t outgrown them because FPIES reactions are so severe that they can cause dehydration and, in the most extreme cases, shock. That’s something I haven’t given much thought to yet because it’s over a year away and we still have a lot more steps to go through before we get there. In the meantime, we’ll continue to be cautious about introducing new foods and hope Jacob’s true love. of. food continues – because it’s long overdue and such a joy to watch.
Related posts:
Jacob’s 15-month Health Update
Exclusive Pumping and Exclusive Breastfeeding: A Tale of Two Babies
xo,
Stephanie
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