The post last week generated some awesome conversation about food trials! Unfortunately, it was all on the FPIES Facebook groups!
There are hundreds of families on those groups, but I know there are lots of people who either don’t use Facebook, or haven’t found the FPIES groups yet. I knew there were probably people searching for answers at the start of their journey who could benefit from this awesome conversation.
So I asked the Mama’s there if I could share some of the wisdom they imparted here in a re-cap post, and they gave me the go-ahead.
Here is some of what I learned from my “Brain Trust” after asking my food trial question last week, and I believe these ladies have managed to find The Answer to the Question of “What is the best way to approach food trials?”
From one mom:
The reason you are supposed to go slow with sauerkraut juice or cabbage tonic is because it is a VERY strong probiotic. I recently read that 1 ml of properly fermented kraut juice has over 100 billion LAB. As a measure of comparison, an entire Culturelle pill has only 15 billion.
My personal opinion (and this may differ from child to child and so what I’ve observed for us may be completely different than what another parents observe) is that provided the child is at baseline (and not still recovering from a fail, a virus, etc) a safe food should be safe. When we first started, we started slowly because I know my son’s reactions are dose dependent. He’ll still react to a minuscule amount of his worst triggers, but the intensity of the fail, the length of his reaction, and the length of his recovery are significantly less the less he’s ingested.
My worry about giving small doses for weeks and weeks is that you run the risk of a chronic fail. I think it makes sense to ramp up slowly, but I wouldn’t go so slowly that you are giving the same tiny dose for weeks before being able to increase and I’d increase as soon as there are no symptoms.
There’s been some interesting research showing that the IgE ANA kids who were giving drops of their triggers to “desensitize” them developed EoE to their IgE triggers. This was big in the allergist world, as IgE and EGIDs were not previously thought to be linked. I would worry about the effect that small doses of an yet unknown FPIES trigger being given in small doses for a time would have on that child’s immune response to said trigger
To clarify, cabbage tonic is weaker, the counts above are for kraut juice. Usually ppl go slow on tonic because those kids struggle with probiotics. You can start with kraut juice (and skip tonic) if your LO is not really sensitive according to everything I’ve read on the GAPS board.
See? Brilliant input!
And another Mama:
I agree with your logic that going too slow is not the right answer either. We went too slow on beef broth increasing by the tsp and took almost a month to react. I’m still trying to figure out how to do trials as the increasing by tsp with regular foods doesn’t work with my fussy toddler, maybe good for an infant. But I think too slow will mask a possible reaction. I am trying now to start small then get to a full dose in a few days as he seems to react to larger quantities so why not find out sooner. No idea if going too quick could make them more prone to react or not be able to handle the food. Wish the docs knew too.
Yet another Mama encouraging us to not go TOO slow:
I agree, there is such a thing as too slow. I know you are a fan of the “bucketful” theory. As hard as it is, I think you have to fill the bucket to know if it is safe or not. We start small and build for three days, then serve moderate quantities for the remainder of the trial period. If you want to do a long trial, I wouldn’t try to dissuade you but I would suggest stepping up quantities so you can fill that bucket sooner rather then later. You also mention confusing issues like fussiness, hiccups, etc. I totally agree that our kids may not be reacting to a food protein – but adjusting to eating! That is why I’m willing to push thru some of the non-GI symptoms. Good luck to you as you start your new approach. I hope carrots are a definitive success!
I think it makes sense to start slow for a few days… Maybe a week. Then give full servings if that went well. The thing is- if it’s a fail that’s a long time coming, there’s probably been inflammation for weeks before it hits the fan if you’re doing reeeeeeally slow trials. That hasn’t necessarily been easier for us to recover from than faster fails. I think in the beginning, we had more slight adjustment symptoms, and as she ate more and more foods, that seemed to taper off for trials.
Maybe until you get a good sense of his particular typical signs of pass and fail, you could do longer trials… But I’d be wary of giving super small doses for a long time.
Here’s another Mama’s thoughtful input:
We too, have found that very small amounts (particularly with trace) make it harder to identify if the food is triggering a response. My son’s safest foods have been safe since day 1- and, for the most part, he has eaten them in larger quantities by day 3 of the trials. We let him guide, to a degree (within a certain serving size and depending on what we are doing). For instance, we know we can’t give large quantities of starches/sugar foods because his dissacharide deficiency will muddy the waters with those intolerance symptoms.
I also can’t help but wonder, as with our experience and other places I have read as such in gut health and such, how much the gut microbes play a role — even here at the introduction stages; and if there is something with the specific make up of the gut flora in the symbiotic vs. toxic picture that decides if the food will be perceived as a threat or not by the immune system. So, the small ‘doses’ maybe doesn’t dramatically change the gut flora enough to see, only until it has been a longer time or a larger serving does that ‘spill over’. But then the larger doses change it too quickly for the body to keep up? Hard to make it make sense but the microbes do a lot of the ‘talking’ in the gut and certainly must have some influence….when you hear of all the variances everyone has, makes me wonder more about it. It’s such a hard balance to find though….and so individualized.
Side note: the Dissacharide deficiency she mentions is basically what Jed has – Fructose Malabsorption. Since we’re concerned Zac will also prove to have FructMal, this was a good point for us to note.
Here’s another Mama’s story:
we do small amounts …a few bites of the food one a day for 2 days …if no vomit/ lethargy/ severe rashing occurs and they still willingly eat what we are serving, then the third day they can consume as much as their little bodies can handle. We don’t typically make it this far though (or at least haven’t passed anything but ROSEHIP TEA in over 4 years). My boys will scream when I only let them have a bite of the “tested food” …they want more and are seriously ticked that I won’t give them more. Usually by day 2, they full out refuse to eat the tested food. Something in their body is hurting and they know to not eat it. They refuse. I agree with what “N” said about the slow trials sometimes leading to much longer recoveries … just because we don’t always see the immediate vomit/ shock/ lethargy reaction doesn’t mean other things are not going wrong on the inside. Typically 2-3 days after initial test we have mucous stools, funky sleep and behavior patterns, pale skin, allergy shiners, blood in stools, etc … takes up to 2 weeks to clear out and get back to normal.
Even more Mama’s chimed in with how they approach food trials, and the general consensus amongst those was to start small, yes, but almost all were at a full serving of the food within 5-7 days of the trial beginning.
In the end? All I can say is two things:
1. If your child has (or you suspect your child has) FPIES, you simply MUST get on the Facebook FPIES Message Boards! The information within is vital and invaluable! These Mama’s are brilliant, creative, strategic thinkers who can help you through this medical mystery better than anyone else on the planet.
2. If you’re doing a food trial, there seem to be some consistent truths to what these Mama’s have experienced:
- If a food is going to be a safe food, it will likely be an “easy pass” – no symptoms whatsoever from the beginning.
- However, that’s not always true. So push through any minor symptoms that could easily be something “normal baby”, such as hiccups, minor sleep distruptions, a little clinginess, etc.
- Start with just a little bit of the food on the first couple of days; many babies reactions vary in severity based on how much of the offending food they ingested. A small amount at first makes sense, in case of an acute, vomit-to-shock type reaction.
- But don’t stay small for too long. The miniscule data that exists indicates this could cause other potential intolerance problems, and experiential evidence indicates this could hide a slow-burn, chronic reaction for too long and cause a much longer gut rest time to recuperate.
- Most Mama’s eventually learn how their children react to foods and food trials and customize the length based on their own needs, but all of them generally follow a pattern:
- Start small
- Increase steadily to a full serving size between 5-7 days
- Maintain trial for a period of 1-7 days
- Take a 3 day break from the trial food
- Resume the trial for at least 3-5 more days
- Make the call: safe or unsafe
There it is, folks! The collective wisdom has answered the question of the Best Way to Approach Food Trials.
I’m no idiot; I’ve taken the advice to heart and put it into action with Zac.
Thursday he ate 1 tsp. of carrots. Friday he ate 2 tsp. of carrots. Saturday he ate 4 tsp. of carrots. Sunday he got a whopping 8 tsp. of carrots.
Tonight, we’re basically going to give him half a serving of carrots (a serving size being 3-4 ounces, that means he will be getting approximately 1/4 cup).
Tomorrow night, a full serving.
We’ll probably hold there for a few more days, then pull the carrots for 3 days and reintroduce.
With any luck, at or before January 25th, we’ll be calling carrots a safe food for Zac!
After all, so far, so good!
A BIG SHOUT OUT to my fellow FPIES Mama’s for their willingness to let me share their wisdom here today! These ladies have earned my undying affection and respect, and we are all willing to help you if you are new to the FPIES struggle.
A little Jed story before I go…
Darrel and I have gotten pretty confident in our ability to keep him un-fructosed. In fact, we’re so pleased with how well we keep his bucket emptied that we’ve decided to be brave on occasion and let him try things that are on the ‘avoid’ list.
Last Friday at the health food co-op, we got him a muffin. Everything about the muffin was safe for him (vegan, GF, etc.) except it had cherries. We figured the small number of cherries in a muffin would be small enough to stay safely within his fructose ‘bucket’ and not cause a reaction.
Were we ever wrong!
Friday night he was a pill to put to bed. Saturday he was actually still a sweet, charming child – but he complained of mystery ailments all day long and had HORRIBLE diapers! (Potty training, still, and on Saturday he flat refused to wear underwear. I think he knew his body was out of whack and was scared he wouldn’t get to the potty in time.) Sunday was another bad diaper, but he’d stopped complaining of mystery ailments. (Seriously – he complained his earlobes hurt at one point!)
Hopefully today he’ll be back to normal, and we can give him some time to rest. Poor little guy.
Thanks for indulging me in this very long post, but I really felt like this was information too good to NOT put together for you! Hope it helps!
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