How old are your kiddos?

Trying to figure out the end of the road here.  We've been told "Marcus will grow out of this by 2."  "Oh. He just turned 2? He'll definitely grow out of this by 3."  

Marcus is well into three and still clearly has FPIES but are up to 12 safe foods.  We were also told it was statistically impossible for our younger son Thomas to get this, but he is showing clear signs as well and I have noticed multiple examples of families w/ more than one FPIES kiddo.

So my questions are:  How old are folks still dealing with this and or when/how did kids magically grow out of it?  Also, how many of ya have multiples in the family?

Thanks for your replies!

Original Post

😂🤣😂🤣😂I told our doctors to stop giving us numbers because we heard the same things! Also when Flynn was two and half months and had bloody mucusy booty drama the doctor on call at our pediatrician said you don’t look at a family of zebras and tell them their kid is a horse. 

I have two FPIES kids. One is 2 1/2 and the other 5 1/2. My oldest has 14 safes. The latest two are this year after three years of no new safes. But he also had a recent fail. The youngest has 12 safes.

Be reminded that a diagnosis code in the US did not com out until October 2015 and no helpful data collection can come out of the us until after that. Minimal studies aside. They don’t know and they are giving you information based upon available data which is minimal.

Lots of kids have minimal triggers like less than ten and grow out of them in a their toddler years but some don’t. We’re still waiting for the oldest to grow out of reflux which we were told would be gone by six months. 

 

Hi there,

 

so sorry to hear you think your second little one also has it, and that you are atill strugging at two. I know some kids do not outgrow it - but it is always whag we have been told as well.

We have two FPIES kids (only one acute trigger for each kid (oats) but we strictly limited food after that one acute reaction). They are now ages 4.5 (outgrew her trigger food thankfully) and 2.5 (same trigger food, hasn’t outgrown it yet). We were also told we couldn’t have multiple kids with fpies especially not to the same food. Noticed signs in our son when he was an infant. Lo and behold, fpies acute reaction after we introduced his trigger as a solid at the urging of our pediatrician. We just had a third baby (7 weeks old) and already noticing mucus in her stools from the first day my milk came in. Starting to play with my diet to look for patterns but definitely avoiding oats as it was a trigger for both our older kiddos. 

Good luck to you and your family!

Thank you both for responding! My wife and I have adjusted to just one FPIES Monster at a time. But now that Tommy is showing similar symptoms (projectile vomiting w/ in 2 hours, diarrhea, rash, red ring) we are back in that "fun" overwhelmed state.  We know it will eventually work out but....

Murphy, I found it interesting that all the docs seem to say the same things in terms of time tables.  Hopefully one day the docs figure this out.  From what I have read, Australia seems to be taking FPIES very seriously.  Hopefully soon there are more answers

FPIESinMI, it was interesting that your docs thought if you had multiple kids w/ FPIES they'd have different triggers.  What was the rationale for that?

Thanks again for your replies!

-Mark

Hi!

My child is almost ten. She had corn (outgrew around 4) and eggs fpies. She still reacts to eggs, even in baked goods. The reaction is milder, a few vomits with bad stomach ache.

She is allergic to several antibiotics and has multiple environmental allergies, pollens and dust and animals. She also has asthma and ADHD, which are often comorbidities of an allergic child.

She is a happy, outgoing child who has a very mature approach to not eating anything containing eggs. She is very matter of fact about not being able to enjoy baked desserts and birthday cakes. School has been very accomodating.

I AM finding it harder to deal with FPIES as she wants more and more independence. Sleep-overs, band competition, summer camp all require careful planning and much stressing on my part!

So hopefully yours outgrows it, but maybe not! I had been diagnosed with IBS but when we went off eggs for kiddo, all my symptoms of diaarhea and bloating stopped...

Good luck!

Sonya

 

Australia has definitely been leading research in recent years. Prior to that it was Israel. With regards to repeated messaging from from doctors I have found that they are all citing the same small research study that hasn’t been duplicated or done on a larger scale yet. Supposedly CHOP will be coming out with new research soon but will it be soon to be helpful to those of us in the trenches.

We have been really lucky in that an ER doc at our nearest hospital (Mott Children’s at U of M) has/had a child with FPIES so we got a diagnosis at ER immediately with both children as the doctor was working to get the allergy coded and recognized. Our pediatrician and allergist both thought I was a little nuts with both kids when I talked of “soft signs” of an allergy - tons of discomfort when pooping, mucus in stools etc. and we never had blood even when tested. So I think their rationale was based in opinion and experience with lots of generalized children with allergies, not in knowledge about or deep understanding of  fpies. In fact, when our second got the diagnosis at ER after his acute reaction, the allergist apologized and told us to follow similar food trials as we did with our first since it appeared that they had similar intolerances (gut flora was the basic explanation).  It worked well for us but fpies seems to be such a unique allergy I’m not sure if it would work for everyone.

and like you, when our second started showing signs I remember being mortified and so overwhelmed about going through the trial and error period again. Luckily, we knew how to approach it and it was less challenging the second time around. Unfortunately, with the third seeming like she’s got signs, too, I’m getting that same feeling again. We also have kids who have sensitive skin, and our second has clear environmental allergies and allergy/illness induced asthma (likely we will get an official diagnosis soon but our pediatrician waits until three to see if they’ve outgrown it). Like a precious poster, we recognize that those things (which my husband and I both have) are often linked with food intolerances (which my husband has slightly to a couple foods but nobody else’s in our families does). 

This has been a very informative post- thanks everyone!  I have one 3-year-old son with 10 safe foods (up from 5 over the winter, so I consider that a success). He had a recent fail last month (tilapia- fish).  Chicken passed this summer though- at least for now . . .  Our version of FPIES is unique- food is always in flux- any food can fail at any time.  

We were told he wouldn't outgrow it until at least age 5.  The only improvement with time is that his reactions are generally less severe.  He also has unrelated reflux, which is controlled with on and off meds.

We also had this same problem at first with our medical team that FPIESINMI mentioned:  "thought I was a little nuts with both kids when I talked of “soft signs” of an allergy - tons of discomfort when pooping, mucus in stools etc. and we never had blood even when tested."  Our medical team intially thought solid food type FPIES reactions always had to be vomiting.  (Not that I haven't seen my fair share of vomit . . .)

My 7 year old outgrew his rice FPIES around 3 or so. He didn’t want to try it for a long time though I know that by age 5 he was able to eat a full serving with no issues! I have 4 children and my second one is the only one with FPIES. But I was very careful with #3 and 4 since. Knew it was a possibility.

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