So picking up from where I left off in Part I…
I started this post by writing the not so fun details about Claire’s first reactions and how we got there. But after it was all written I didn’t feel any better. (In fact, I may have felt worse reliving them.) My point in sharing anything about her allergies at all is that it’s difficult for me to just go back to posting pretty pictures. The experience has been draining and the day-to-day management of it all is still difficult. Even on a good day, her allergies impact everything. And until you live with allergies, I’m not sure there’s any way to really know what that means. I’m hoping that by writing the story I can let it out, explain where we’re coming from, educate others, and continue my efforts to find some peace within it all. I don’t mean to just give details and complain. Her reactions were scary but they could have been worse. There are a lot of things she can not eat but that list could be much longer. Unfortunately, we have no guarantee the next reaction won’t be worse and that the list won’t grow longer. So it’s that uncertainty that can cause me so much anxiety.
But let me back up. And jump into a whole lot of educating. Feel free to skip if you don’t care. ;)
Claire’s first reactions were all between 6 and 8 months. First to cow’s milk and then to turkey. I know what you’re thinking. “Turkey?! No one’s allergic to turkey!” Yes. Turkey. She is allergic to turkey. She has a rare allergy called Food Protein Induced Enterocolitis, or FPIES for short. The fact sheet below from the FPIES Foundation highlights a few of the things that make this kind of allergy unique.
There is no test for FPIES. The reaction is in the gut so standard allergy testing like skin pricks and blood work generally produce negative test results (thought it is possible in some cases to have both types of reactions present at the same time.) FPIES is diagnosed primarily based on patient history.
The “Top 8” common food allergens that people are becoming increasingly more aware of are peanuts, tree nuts, milk, egg, soy, wheat, fish, and shellfish. However, the common food triggers for FPIES tend to be those that kids are fed first – cow’s milk and soy are most common but rice, oats, bananas, and sweet potatoes (among other things) are also very common and, as noted in the fact sheet, FPIES can occur to any food.
My last two points mean that there is no way to know what your child is allergic to without feeding it to them. Let that one sink in for a second. Every time you give your kid a new food there’s the fear they’ll vomit profusely. (I realize that technically this risk exists in all children. But there’s something different about having seen it happen. You already know their body is reacting inappropriately to some foods and so it’s hard not to worry there are more. Plus, like I said, for this allergy, there’s no test.) To manage the severity of reaction, the recommendation is to introduce new foods one at a time and in small, increasing amounts. There is no standard protocol for what that introduction period looks like but, since reactions don’t always occur right away, common practice tends to be to increase the amount up to a full serving over 7 days, take a 2-3 break, and then feed full servings again for 4 more days. The logistics of these food trials, as they’re called, for every single new food, spice or oil that you give a child are overwhelming and complicated.
What complicates things further is that FPIES is not very well understood within the medical community. Patients are often misdiagnosed or bounced from one doctor to another looking for an explanation for their symptoms. The sheet above describes an acute reaction but babies can also have chronic reactions which are milder and more difficult to identify but can result in weight loss and a failure to thrive diagnosis. So often, parents will stumble upon a diagnosis after googling symptoms like “infant vomits after eating sweet potatoes.”
Current medical research does not always align with what parents are describing within the Facebook support groups, likely because the sample sizes in the studies are so small. For example, current research suggests most kids only have 1 to 2 triggers, will grow out of their allergies by 3, and the only siblings who have FPIES are twins. But patient experience indicates those things don’t always hold true. The difference between the two can lead to difficult relationships with the medical professionals so desperately needed to help the families going through this. It also means that doctors don’t really have a ton of answers. The problem with any type of allergy is that each person can react so differently. So the doctors can give you their suggestions and try to guide you towards foods that will be more successful based on the history of reactions but, ultimately, the only thing you can do is try.
So that’s a lot of information, no? And it’s just the summary of it. If you’d like more information, the International FPIES Association is another fantastic resource, and they lead the way in trying to get more research done. So, I’ll get to what this all means for us in a future post but how about I stop here to let your head stop spinning. :)