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We're starting broccoli today...the allergist didn't really say what amount to give my LO at first.  The doctor in the Good Morning America segment mentioned 1 Tbsp for trials...is that what everyone does?  I've also seen some of you say that your kids need a certain minimum to see if they will react...so would 1 Tbsp be enough?

 

I've already processed like three heads of broccoli and frozen it (can you say optimistic?)...this is the first trial where I don't feel on edge...we passed potatoes and carrots, so we're looking forward to adding a green!

 

Thanks!

Amanda

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HI!!  We actually start with 1 teaspoon of a food.  If no signs or symptoms of a reaction, we move to 2 tsp the following day.  If only minor symptoms show, we usually try one more day.  But, personally, if there are any painful symptoms (screaming 2hrs post ingestion, raw bottom etc), we just pull it. I don't feel it's worth pushing through the pain.  When we add a safe food, it's TOTALLY safe....Hope this helps!!  Good luck with the new trial!!

Thanks, Jill!  Our symptoms always show up on day 5 - so it sounds like we're in the same boat for the watch and wait  Our allergist thought that 5 days was pretty delayed, she had only seen 1-2 day delays before Matthew.  So she suggested that we trial for 3 weeks...but that's SO long and this little guy is HUNGRY!  We decided to stick to a 2 week trial and see how it goes...

 

I will say that just the look of the broccoli has my stomach in knots b/c the last green food (peas) was a fail  I guess we'll know next week!

I'm a bad example, I'm sure! We've always just "gone for it" and let her eat what she will of the food we were trialing. For the longest time Kara only had rice, oat, dairy and soy reactions. Now, things are a mess with her having very delayed reactions and way down the road from when we had previously thought she had passed them. My fault for not trialing long enough, I'm sure but when her first few fails were upon the first serving of the food (and the extreme lack of knowledge and resources at the time!!!) we just went for it, trialing each food for about a week.

Love the discussion-- this is always such an interesting topic. As for why most people seem to start small and build up. . .I think there are different reasons. I know we have been told that there is a theory about smaller amounts to start making a reaction smaller, but I think that is so dependent on each kiddo. B has had her most severe reactions to the tiniest amounts of food. But we have only "gone for it" with a couple of foods--- arrowroot starch and raspberries (After a very convincing blackberry pass). The other thing I have read about is the idea of fostering oral tolerance by starting out slowly with foods and in small amounts. As I understand it, the idea is trying to "teach" the body to accept the food by slowly working it in to your LO's diet. Kind of like if you were teaching someone to swim who was wary of the water-- you wouldn't just pick them up and dump them in the deep end. You might have them put their feet in the water first, then sit in very shallow water, then walk into water up to their waist, etc etc. So essentially (again as I understand it) with our kids, we are trying to ease their immune systems into acceptance of the foods--- "It's ok-- just a taste today." etc. Again, these are just some theories I have either read about, heard through the grapevine, heard from B's doc. I think the important thing is to get informed about these different "methods" and see if any (or maybe a little bit of each!) make sense to you for your LO. Janice Vickerstaff is a great one for learning about fostering oral tolerance. That said, I am unsure if anyone has ever done a study on what food trial method is the best. That would be an interesting thing for someone to research at some point wouldn't it? It would certainly make it easier for us in the trenches! Ok, sorry for being so long-winded. The whole food trial method thing really interests me! (I am a nerd for FPIES!)

I think what's also interesting is not only the quantity of food given, but reintroducing the food after a few days. My DD did well with both soy and chicken for 2 weeks. When I stopped them both (at different times of course) and reintroduced 4 days later, is when her reaction occurred. So, to your point above, we've seemed to experience this continuation of the food in order to build a tolerance

OK, that's really interesting SmileyBabyMama.  B/C as pure coincidence, my LO reacted to rice and peas (the first foods he ever had) on the 5th ingestion, which also happened to be after a 2-5 day break (my husband was away on business in Taiwan, and since the LO wasn't eating well yet I just didn't want to fight that battle alone).  

 

We've always wondered if it was that it was the 5th ingestion or the break that prompted the reaction.  We even built a break into our carrot trial to see.  When we saw the allergist she didn't seem to think we needed a break, but one of the FPIES updates I've seen states:

 

"The disease presents in two phases: the initial presentation is that of a chronic disease while the antigen is being ingested. This can be followed by an acute phase if the antigen is removed from the diet and subsequently re-ingested, with symptoms occurring about two hours after ingestion"

 

So maybe I should build the two day break back in, just in case....

This is all really good info! My little man is 5 months so we are just starting to trial foods too. He also reacts about 5-7 days after a food has been introduced.  I have been doing small amounts of a new food and building up each day. When I first started rice I went for the "go for" it method because I just needed to know if he was going to react or not. I regret doing it that way because he actually became very backed up. I pulled it for a week and am trying again slowly, like I did with other foods. I trial each food for 10 days, which is getting really hard to be patient with because he is a big boy and wants to eat, and as a mom I'm excited to let him try new foods. He has been doing really well with fruit so far, pears, apples, and peaches. I just started plums and will do nectarines soon if all goes well (he has been doing rice for two days). I have to constantlyremind myself to slow down. I think because he has been doing so well with fruit it has given me a new confidence that he is going to be okay....which makes it very tempting to not wait the full 10 days. (his triggers that we know of are dairy and soy)

When we started DD on rice at 6 months there were big gaps in her first food trial because she was developing a cough at the same time. She had a classic FPIES reaction on her 5th and 6th days of her rice trial. With all of this talk about taking breaks during food trials, I'm wondering if taking a break makes a child react to a food when they wouldn't have done so if there were no break. Also, does feeding too much of a food at one time do the same thing (instead of going slowly and building up to a full serving)? Does anyone have any information on this?

 

I love this discussion thread because this is certainly a hot topic- I think it is even a hot topic in the research world as a research immunologist has told me that they are looking that there may be two types of FPIES (within FPIES), and this paper (listed below) talks about how it is a spectrum.  So it really could be happening both ways- it just leads more to the individuality of this disease and how much you need to know your child's patterns of symptoms (it really is all about momma instinct!)

 

Caubet, J.;Nowak-Wegrzyn, A. Current Understanding of the Immune Mechanisms of FPIES. Expert Review. Clinical Immunology. 7(3), 317-327 (2011). http://www.expert-reviews.com/...df/10.1586/eci.11.13 

 

Is really an excellent read- it is FULL of information on FPIES, but it does touch on the chronic vs. acute langauage we all see in our children or hear of in the support groups. 

 

Page 7 talks about the spectrum and threshold of FPIES symptoms and triggers. And page 8 "clinical manifestations" talks about the chronic FPIES symptoms.  

As for us, although we haven't gotten very far in too many food trials (passes I mean)- my little man has much more of the chronic FPIES symptoms- and "builds" reactions....although he had acute reactions to dairy and we've never tried a whole dairy protein with him.   His reactions to corn were a chronic course. 

 

I have heard of families utilizing that when they are trialing- to trial a food for a few days and if there are any symptoms of concern to just stop the trial and pause and then restart.  But I get what you're saying- is that inducing the loss of oral tolerance (the body forgets that it was tolerating that food)....I've never heard of it (NOT saying it hasn't happened) but haven't heard of a mom saying that she suspended a trial that was passing with flying colors only to come back to it and fail upon first re-exposure.  The ones that fail upon re-exposure had conflicting and potentially building symptoms prior to the pause. 

 

Our allergist at CHOP described it well when I asked about the 12-18mo. avoidance...he said the T cells regenerate and "have babies" upon each exposure to the food, and those babies have more babies with each exposure- so pausing gives them enough time to build up their army's; but the 12-18mo. avoidance leads them to "forget" their memory of it and disassemble those armies.  If that makes any sense.   The immune system is just SO complex.   I did find this just today when doing some further reading on Tcells: http://www.nobelprize.org/educ...y/immune-detail.html 

thought it looked interesting, although I admit I haven't read it fully through yet but liked the way it is written. 

I am not sure if the delay was the cause for us or not, but we have failed a past safe food after a break.

 

Samaya had been safe with avocados and I had tried like crazy to keep them a regular part of her diet because they are so good for you.  They were an early pass, but I know they had been safe for months.  Then I got frustrated because I kept buying rotten avocados from our grocer and gave up for a month or so.  Upon re-introduction they were a HUGE fail with some of the foulest diapers I have ever smelled!  The exact same thing happened with another kiddo and avocados.  Weird, right?!  I have no idea if it was a result of the break, but we don't take long breaks anymore.

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