Friday marked the two year anniversary of my FPIES TED.
I remember waking up on August 8, 2012, excited but apprehensive about the new diet our family was beginning. If you had told me then that two years later I would still only be able to eat 15 foods, I would have thought you were either crazy or the biggest pessimist in the world.
Yet here I am.
My original 12 item TED dropped to a 10 item TED within the first month. A year later it reduced again to 6 items. (Four of which were sea salt, pepper, stevia and olive oil!)
The only new additions to my diet since have been the foods declared safe for Zac; to be honest, though, most days I still wind up eating the basic TED.
Some of Zac’s safe foods are either too hard to get or too expensive for me to feel okay about consuming in any significant quantities. The rest I just haven’t found a way I like them with my limited ingredient list.
I’m working on it, though. My diet is much more palatable than it has been.
The most amazing thing about this experience is that all of Zac’s safe foods were discovered during the second year of my TED; last years “one year anniversary” post found me saying that even though we hadn’t found any safe foods yet, the TED was worthwhile.
Fifteen months on a TED with no safe foods for Zac…another nine months on the TED where we found nine safe foods for Zac…and on this anniversary I find myself wondering:
Is Zac outgrowing FPIES?
Last Monday we attempted to start a pole bean trial. For three days he refused to eat a single bean. I asked for, and received, lots of great ideas for how to present them in a way he would find appealing, but nothing I tried worked.
Then I had to get ready for work, and decided to just shelve the trial for now.
Last Thursday, the day before I left for work, he and Jed played with sidewalk chalk, after which he licked his hands.
Saturday he ate a full, big bite of Jed’s pancake; a store-bought mix that has multiple ingredients.
Later that day he licked the top of the salt shaker.
Sunday he chomped down on a big ol’ piece of Jed’s sausage. Sure, it’s pork, but it’s not specially raised corn and soy free pork AND it has a bunch of spices and sugar added.
All of these accidental ingestions sent my Mom and Darrel into panic, but in the end he exhibited not so much as a single bit of mucous.
No reactions. At all.
Over the summer he has eaten quite a few things he shouldn’t eat; one of the scariest for us was a corn chip Jed had dropped.
No reactions from any of them. Not even the corn chip!
All of this lack of reaction is forcing Darrel and I to seriously think about whether Zac is outgrowing his FPIES.
Maybe he is. Maybe he isn’t. How would we know, either way?
Most FPIES parents discover their baby has FPIES after the introduction of solid foods. So they have the benefit of knowing with certainty that soy, oats and rice (as an example) were their child’s first triggers.
Because we were diagnosed at under two months old via breast milk, Darrel and I don’t really know what foods were triggering Zac.
We can guess, though, based off my diet.
Our most likely culprits are rice, sweet potato, corn, oats, and chicken. Since chicken is now a safe food for Zac, that leaves me with a fairly short list of potential “first trigger foods”.
(Incidentally, Zac passing chicken is yet another reason I suspect he’s outgrowing FPIES.)
So what to do now? Continue as we have, just trialing random selections of foods in the effort to build his diet?
Or get brave/crazy and trial rice, oats, and sweet potato?
(I’m not ready to trial corn; frankly, it scares me to death.)
But rice, oats and, sweet potato…they would sure be a nice addition to our diets!
I’ll admit no small angst when I consider this. The idea of not living with FPIES is…alien and confusing.
That’s strange, right? The fact that being normal could seem so odd to me now.
The thing is, when I reflect on the last two years it seems that Darrel and I, of necessity, chose to start wearing magical glasses that rendered the world in black and white.
Slowly, we’ve worked our way up to sepia toned glasses.
But living without FPIES…well, that would be like suddenly being able to see in Technicolor!
It’s a little strange and overwhelming to consider.
We’ll never be able to live in 3-D; fructose and histamine will still influence our food decisions. They’re lifelong conditions to manage.
FPIES, though. It isn’t necessarily lifelong.
The idea of being able to eat somewhat normally is scary and thrilling.
It almost feels like pretty much every new experience I had during my high school years. Scary because it’s new, and thrilling because I want to do it SO BADLY!!
Two years into my TED, and I’m still completely, 100% certain I did the right thing for my son.
Now I just have to decide if all that effort is being rewarded.
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What do y’all think? Does it sound like Zac may be outgrowing FPIES to you, too? What should we do now?
Ha, I love your analogy of sepia, techinolor, and 3D. That’s really spot on. We have our in office rice trial in October and the idea that if he passes that it might be safe freaks me out. Like – awesome! And also, wow, so many foods that would be open after that! And what if we are starting outgrow!
You are pretty awesome for keeping on the TED and working and all of the craziness that goes with all of that. Well done. I hope you get to eat something that you’ve missed the most very soon (mine would be a Margarita!). 🙂
Thanks, Sara! LOL at the Margarita. 😉
I really hope and pray your office retrial goes well. That would be wonderful!
So happy for you guys! I can’t wait till we are at this stage! It does sound like it… to be honest though, if he ate a corn chip, that would be the one I’d trial first. Since he’s already shown that he didn’t react to that one exposure, you’re more likely to get a pass this time around. 🙂 This is about the age that they start outgrowing it too, so I don’t think the idea is crazy at all. You don’t have to go sink or swim though… we’ve gone Paleo as a way to compromise. (Avoiding grains, sugar, dairy and beans/legumes is still very hard on top of the other foods she can’t have). You’ll never know until you try though. If it was me, I’d try one you think he’s most likely to pass, and if he passes it, great, move on to another food you’d like to trial. As soon as he get a fail, then stop doing your re-trials. If he passes those foods, you’ll be able to get a lot of mileage out of the new additions! We’re in 7th heaven that our little B can eat chicken, beef and tilapia! Three meats is huge! I’m hoping for your sake that things go well. We passed chicken, but not turkey. Whatever you do, please keep everyone posted. you guys are inspiring for other FPIES families.
Thanks for the input and suggestions. We’re leaning towards sweet potato right now. 🙂 And I’ll always keep y’all posted! LOL
So exciting!!! H. outgrew most of her triggers by 2.5 yrs. with only mild reactions to the things left after that. Also H was always ok with sweet potatoes and rice which are 2 of the most common triggers. I would start trialing the ingredients in the pancake mix and see how it goes. How awesome would it be if everyone could eat the same breakfast. I would still keep trialing foods one at a time until you have gone back and re-trialed foods that you know he has reacted to. If he starts passing those foods then I would consider FPIES a thing of the past and just feed him. 😉 That’s how we handled it anyway.
Gasp…you mean, I could feed him multi-ingredient foods? Without stressing out or freaking out? What is the blasphemy you speak! LOL Wouldn’t that be just heaven on earth?! Maybe it will be that way soon…
Understand completely! Gracie is 3 and so far passing everything we try including apples which ass a past major reactor. I’m so scared and remotes to just “feed her” and see what happens! I even gave her a piece of Boom Chicka Pop Cheddar popcorn with no issues! It so hard to stop looking at the world through FPIES eyes when you have for sooooooo long…..
Yes, it really is a difficult thing to even contemplate doing, let alone actually doing. So glad to hear Gracie is passing foods! Yay!!
You are one amazing mom! 2 years on a TED is unfathomable to me!
This is great news! I would keep going forward with your new food trials. His (and your) diet is still so limited and there is a greater chance he’ll pass something new compared to something that was probably a trigger. If you are feeling brave, try wheat. The protein structure is pretty different from oats and rice and would be a huge gain for you! It seems like many kiddos do well with wheat (I can’t remember if you’ve ever tried). Either way, good luck. The end might be near!
Thanks, Cathy! We never tried wheat, but Jed can’t tolerate the fructans in wheat and I’m pretty sure wheat was a chronic aggravator for me pre-TED, so…that’s actually one I’d like to hold off on for a while for Zac. It would be a lovely pass to have, but since I strongly suspect fructmal problems for him, too, it’s another of those “later on, when we’ve outgrown FPIES” trial foods. Thanks for the suggestion, though.
You’re right; we’ll still probably keep up with one food at a time trials. We just may speed up the timeline and not trial each for for quite so long. 🙂
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