These two. They bring so much love into my life.
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. :)
Oh, where to start?
(First with a little foreword. I wrote everything except this paragraph back in the beginning of April. It was a time when I was really not doing well. I’m not sure why I didn’t post immediately but I’m finally coming back and will just post as-is and follow up with the rest of the story in another post. So here goes…)
How about we just get it out there…Claire has severe allergies and eczema. If you know me in real life you already know this. It can, at times (lately? since she was born? it’s hard to remember), be all-consuming.
A friend asked how I was doing recently and I responded that I was about the same as usual – I have a bad case of the allergy/eczema blues. She said that could be the title of my book. True story. Except I just googled it and Eczema Blues is already a blog. I’m not surprised. This is a very real thing.
But let’s back up.
Claire is awesome. She is stunningly beautiful, wickedly smart, super funny, and the kindest, most thoughtful little girl I could ever hope to meet. The fact that I get to call her my daughter and watch as she discovers this world brings me endless joy. I mean, just look at that glimmer in her eye and those silly little faces!
(And, as a side note, for an amazing read on keeping that glimmer, read this Dear Bee – what a beautiful gift these letters are to her daughter!)
But her allergies are complicated and anxiety-inducing. Mostly because we don’t even know what they all are. I am bombarded (by mostly well-meaning, so I don’t mean this personally against any of you) questions, comments and suggestions on a regular basis. It can be exhausting. So let’s write down what I know. (Or maybe just what I think? Feel? Don’t know? We’ll see where this post goes.)
Claire’s pediatrician told me on her second day of life that the rash she had indicated she’d probably have food allergies. In my postpartum bliss, I put this aside. Neither Pete nor I have food allergies. I did pretty much everything they recommend you do to protect your children from food allergies (not specifically with that intention, necessarily, but I did.)
We had trouble nursing. First latching. Then with how long my milk took to come in. And then with a baby who would get very upset after eating.
Looking back, I don’t even know what order a lot of things happened in.
Did I know then that eating was the problem? She nursed all the time so I don’t know that I did.
When did her eczema start? I don’t know that either. I don’t think the doctor called it that specifically for a while.
What about the back arching? Hmmm. I don’t know that either. But I specifically remember thinking when she was around 3 months old that the books had lied to me. My baby was getting fussier, not settling. Everyone would tell me what a good baby she was and it just made me feel worse. Don’t get me wrong, she was a good baby. She is so good. For the reasons I listed above and a million more. All babies are good.
But it was hard. And I’m sure all babies are hard. But I think this baby was hard to me because I was the one feeding her. She’d be kicking her little legs (which I now think was the eczema on the backs of her knees bothering her) and she’d go on and off, on and off (which I think was because her stomach likely hurt.) My grandmother, who nursed 5 of her own babies and has witnessed who knows how many more nursing, said she had never seen a baby nurse like that before. Hmm.
I tried eliminating dairy. I tried eliminating acidic foods. Maybe soy too? I don’t remember when any of this was either (maybe Pete will write a post that contains actual details? Pete?) but I do know it didn’t seem to matter. I felt like I was not eating well at a time I needed to the most and it wasn’t helping one bit. I added them back in and then one day finally did see the connection to too much dairy. So I cut back.
She didn’t seem as uncomfortable but she still had her rashes. I was told to just treat the rashes with steroids and oral anti-itch medication, that they likely weren’t a sign of food allergies. I think it’s something like 66% of eczema that really is just a skin rash and her eczema was limited to specific areas. Unfortunately, with what I know now, I should have been more careful. I should have tried to identify whether any other foods I was eating were causing her problems. I don’t mean that in a guilty kind of way. I didn’t know. But I wish I had.
I’ve been following the I Heart Faces blog for a while now and always tell myself that one day I’ll start entering their photo challenges. I mean, cute little faces are my favorite thing to photograph, after all. But we all know how “one day” goes. It turns into never if you’re not careful. Well, this month they sweetened the deal and also have a giveaway from a site called Folio. And, it just so happens that I had previously decided to use Folio “one day” if (when?) I ever launch a photography blog. So, nothing like 5 extra giveaway entries to finally make me do it!
This month’s theme is Orange. And what do I love more than my sweetest little pumpkin.
To check out the other “Orange” entries, click on the button below:
Claire was born almost three weeks ago, on October 18th, which just so happens to be my birthday too. Talk about the best birthday present ever! For several years, Pete would ask what I wanted for my birthday or Christmas and I would answer “a baby.” I never expected it to happen quite so literally though. According to the doctor, she was due on the 20th but, based on my fertility charting, I actually calculated her due date as the 18th. I’ve never really been into celebrating my birthday but now we can celebrate her. Hopefully she won’t mind sharing her day with me when she gets older.
You might remember that last year around my birthday I declared The Year of the Sparkling Buddha. We got off to a shaky start but I would have to say that my year was about as sparkly as you can get and I sure did a good impression of a buddha belly by the end!
Our little family feels so loved and so grateful for all the friends and family who have stopped by, brought food, and sent their well wishes. As we continue to get the hang of being new parents, I’ll try to post more as I can. :)