Food allergy families are always looking for the safest and best ways to approach food trials, so I’m here today to tell you the simple truth:
I don’t have a clue, either.
But – Hah! Gotcha with that title, right? (Sorry, felt like having a little fun today!)
Seriously, though, Darrel and I have been talking about this for a while and I’ve paid attention to what I read on message boards. In the end, I’ve come up with some observations and made some new decisions about how we are going to proceed with Zac in the future. I thought I’d share those thoughts with you today.
To begin, a quick recap of food trials with Zac thus far.
- Quinoa: started pretty slow and easy, seemed fine, pulled it for the 3 day break and he got an ear infection that threw us off course due to antibiotics. Finally were ready to trial it again, and decided to try and heal his gut first with some…
- Lamb broth: started slow and easy, seemed to be fine so we gradually increased the amount. Continued to be fine, so we jumped right in to…
- Lamb meat: feeling confident because of the lamb broth success, we gave him as much as he wanted! He did well on it! We pulled it for the 3 day break, and reintroduced it at the same time as we reintroduced quinoa (because we’d been told the proteins were identical to the broth so assumed the meat was already a safe food. Never. Assume.) The next day he had visible blood in his diapers. Pulled all 3: quinoa, lamb broth, and lamb meat.
- Quinoa (again): finally got him as close to baseline as we’d ever get and gave quinoa another shot. He had absolutely no symptoms whatsoever – in fact, it seemed to help him get over the mild reaction to some strange thing he’d eaten earlier!
- Broccoli: gave him as much as he wanted from the start, and he loved it! He’d eat a stalk per meal all by himself! Three days in…bloody poop. Pulled it.
- Swiss chard: never really loved it, but we tried to get him to eat as much as he would take. Finally figured out he would eat it better if it was baked in to his quinoa nuggets. Took about a week before there were enough strange symptoms to make us stop and pull it. (Hiccups, sleep disturbances, crankiness, clinginess, increased nursing, etc.)
- Carrots: sigh. The next time we start carrots, it will be the 3rd time we’ve tried to have a trial. It keeps getting interrupted! He does seem to get a diaper rash from the carrots, and has had hiccups, sleep disturbances and general “miserable baby” syndrome, but that could be explained by either his excessive teething, or the stomach bug that visited our house.
Okay, so thinking back over that list, I considered what a friend of mine is going through. She started her son on cabbage tonic (think sauerkraut that has only fermented for a week or two instead of a full two months) as a natural probiotic, healing food.
She was giving him a very small amount (something like a few mL per day) and her son was reacting to it in an extreme way!
The other moms said that they’d had to start their kiddos with ONE DROP of cabbage tonic at first. Sometimes even half a drop per day! They said that for some of them, it took months of very slow, steady increases to get to the point where their child could handle a “regular dose” of the tonic.
Granted, she’s trialing a probiotic food and those are rougher on the digestive tract, but still…maybe, with a sensitive gut like Zac’s, we could learn something here?
Maybe we’ve just been moving too fast.
Maybe lamb, broccoli and Swiss chard aren’t actually unsafe for him at all…maybe we just bombarded his little system with too much, too soon, and his body rejected it because of that – rather than it being a case of the actual proteins being a problem.
Maybe his digestive tract just doesn’t know how to handle foods.
After all, it took us three tries to prove quinoa was safe for him – and there were some disturbing signs at intervals along the way.
As a very wise FPIES mama friend of mine often says, “FPIES is a marathon, not a sprint”.
Maybe we’ve been sprinting a tad too much and we need to pace ourselves better.
So Darrel and I decided to hang back a bit and go slow. Like, “make me crazy” slow.
So we will reintroduce carrots, but he will only get a teaspoon of carrots at a time for the first few days. We will slowly increase that, watching for reaction signs along the way.
It may take us two months to work up to a full serving of carrots; but at the end of two months we will KNOW if carrots are safe for him.
And that’s still faster than the five months it took us to discern quinoa as his first safe food (even though it’s not nearly as fast as we would like).
I just can’t stand the thought that I’m blowing through foods that he might be able to tolerate IF we gave his system time to adjust.
So…fingers crossed that slow and steady wins the race!
And when we are finished with carrots (either through success or reaction), we will repeat the process with our next food. Heck, maybe we’ll re-trial lamb, just to completely prove our FPIES insanity!
What do you think? Do you think slow and steady is the smarter way to trial foods for sensitive guts? Or are we being overly cautious and need to speed up?
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Food trials are something I loathe! It takes an act of God for me to build up the strength to put that first spoon full of food into my little Grace’s mouth, but I know that it is in her very best interest. Our only big reaction has been to rice. With that said, I think there is no right or wrong way in doing food trials as every child is completely unique in how they react. Some are acute or chronic and some are both kind of reactors. Our trials are done of a 2 week time frame with a 2-3 day break somewhere in that time frame. We start out by giving a tbsp day #1, 2 tbsp day #2, 3 tbsp day #3 (you get the picture) until we work all the way up to a full serving and then hold. If there is ever any question or any illness I might pause the trial or hold and give the same amount for several days until either she the questionable reaction subsides or rears it’s ugly head. I’ve pulled corn after 4 days because of the slightest amount of mucous, with no other symptoms. In hindsite, I should’ve held the same amount of food and kept going, but at that time I was completely anxious because it was our first food trial after our FPIES diagnosis. I don’t consider sleep disturbances a fail unless there’s she arching her back and screaming at the top of her lungs and inconsolable. And I don’t consider behavioral issues a fail unless it’s something completely out of left field and persists. Oh there’s no right answer and everything with the FPIES beast is in the grey zone. But, this is how we do our reactions and our last couple of passes have been HUGE!!!!! Good Luck Mama!
Thanks for commenting, Serena! I know what you mean about food trials being an act of God thing. If you’ve read for any length of time, you’ll know that our first food trial actually gave me a full-on panic attack. Ugh. I hate FPIES.
After reading your comment and the input on the FPIES boards, your approach to food trials is actually the one most highly recommended. So I guess that’s what we’ll do. It’s still slower than what we WERE doing!
Thanks, and continued good luck to you, too!
Here’s my totally non-FPIES experience with this: milk. Cow’s milk proteins are some of the biggest, hardest to digest proteins and humans are the only mammals that consume milk after infancy (hence the rampant lactose intolerance among people from cultures who didn’t raise cattle). Anyway, my European blood makes me totally able to drink milk just fine. But my husband and daughter take after their Native American ancestors and can’t drink cow’s milk without adding lactaid. So we as a family drink lacaid-added milk. Then, when I, who am not the least bit “lactose intolerant” have a big cup of regular milk, I react to it as though I am lactose intolerant because it’s been months since my gut had to process lactose. So…. I would say that supports the slow and steady model… proving that even “safe” foods can wreck your gut if you haven’t had to work on digesting those proteins in a while (or at all).
Or maybe people were just not meant to drink cow’s milk.
LOL Rebecca! I love your input. Yes, there is some debate in the foodie worlds about whether we should all be dairy free or not. I’m not sure what I feel about that. Cheese and butter are SO GOOD! 😉
Slow and steady seems to be a winner of an idea, but maybe not as slow as I was thinking. There’s a sweet spot to aim for; we were on one side of it going too much too soon, I think, but apparently one can go too little, too slow.
I hate FPIES. 🙂