Food Protein Induced Entero-colitis Syndrome (FPIES)

[my3girlsjde]

Very interesting about the language difference. E would fit the bill for the slow onset one, and was getting pretty uncomfortable near the end.

Kind of a catch '22. I could have kept her on all of the offending foods and she would have likely been a projectile vomiter. And taken more seriously. Or happy, healthy baby hard to diagnose.

Thanks for posting that. Will definitely update after our allergy appointment next week.

[ENMS]

Kind of a catch '22. I could have kept her on all of the offending foods and she would have likely been a projectile vomiter. And taken more seriously. Or happy, healthy baby hard to diagnose.

Exactly... so sad though that your doctors didn't take you seriously. Again, I cannot believe how lucky I was with the allergist. 

(((HUGS))) Vicki.

We met with the nutritionnist yesterday, she will assist me with the introduction of solids.  She has also shared with me what the other kids she works with can and cannot eat, and showed me how to do a food journal. It was interesting.

I'd say that yesterday was hard for me though.  The reality hit me hard.  Up until not long ago, I thought he was allergic / intolerant to milk and that it was going to be a challenge, but by 1-2 years he would be ok.  Wednesday changed all of that. He's likely to be allergic to a whole lot of thiings, we won't be trying milk anytime before 2 yrs old, and he is at risk for a severe reaction.  I was a bit freaked out at night.  I know it will all be ok, but it's a lot to process.  DD is in a home daycare and DS will be going there this fall, I was scared she would not want to take him because of all the restrictions it will put on her (I will have to bring all of his meals of course, but she still needs to be much more careful about everything).  But I spoke to her yesterday and she is more than fine with having him, thankfully.

[anna*]

There is another FPIES mommy on the forum... I want to say Maggie? Her daughter did have the full blown projectile vomiting reaction.... perhaps one of the mods could do a search for you and give you the username so you could get in touch? I know her diagnosis was over a year ago, perhaps even more, so she might have some pointers for you.

[ENMS]

We started trialling apples on Monday, I was super positive until I realized that he's been increasingly waking up at night since Tuesday night and increasingly fussy during the day.  So, no classic FPIES reactions - his poops are fine, no vomiting, no increased spit up, everything seems fine.  But we have one fussy baby, and two exhausted, sleepless parents. So DH disagrees but I'm quitting it as of today. Even though it is not an 'official' failed food, I'd rather have a happy baby and happy parents. Give it a few days, hopefully he'll get better and we'll trial pears this time. I went with apple because that's waht the nutritionnist recommended, I knew it was bad for reflux but I figured maybe his reflux was just caused by the FPIES and that if we could get one good, FPIES food, then the reflux wouln't be as bad.

[my3girlsjde]

Hugs about the apples hun. We've had so many failed milk attempts and so any things come up that i think you've got the right attitude. And the lovely thing about reflux bubs is it may be anything making him miserable with the apples. FPIES or the reflux so who knows.

Good luck with the pears

[Amanda5555]

Oh sorry about the apples!!!!!! That sucks (HUGS)

[maggie2]

Good memory anna!!  Yes - it was us with the experience with FPIES...

Elise - I'm so sorry you're going through all of this!  I'm going to go back through and read everything but wanted to reply quickly.  I can totally relate to what you're going through so if you have questions or just want a virtual hug, here I am:)  Pm me any time...

Here's a thread I started when my dd first started solids and had her episodes - http://babywhispererforums.com/index.php?topic=165003.75
not sure if it's in this thread where we finally figure out it was FPIES - the doctors had NO idea what was going on.  It took three months for a diagnosis and that was only after I googled like a mad woman and found out about fpies myself - I then brought the info to the her allergist and told her that THIS is what she has,  We had the official diagnosis that week.  Odd though because believe it or not, our allergist works with one of the leading fpies docs and still didn't make the diagnosis until I brought it up months later

Anyway - this is bringing up all sorts of old emotions!  I read some of the thread I started and remember now how horrible that whole thing was.    We had to avoid everything on the list for several months and more than once I found myself in the babyfood isle of the grocery store fighting back tears and wondering how the heck I was going to feed my daughter - there was literally not one thing she was allowed to eat in those isles.

But do know that things are much better now!  She's 3 now and we've introduced almost every food successfully - we still don't give sweet potato and winter squash (the two that she reacted to initially) but will wait to schedule hospital trials for those.  My dd also reacted to dairy, soy, and eggs on the patch test - we introduced those at home and she's fine with them now, so I think she's probably outgrown the sweet potato/squash thing too by now.

Anyway..  big {{hugs}}!!!!  pm me any time:)

[PixieD]

Hi, just had a quick look on the allergies board not really expecting FPIES to be here but it is!

I think we had an episode like this on Wednesday. But it's strange, I haven't introduced anything? No solids as yet, but he woke, took his bottle, and about an hour later was reeeeeeally tetchy, fussy.

I thought it was weird for him to be so tired so soon but a change of scenery wasn't helping, he was acting tired, so I took him up and started the whole 'nap time' process. Laid him down and said out loud to DH 'it's weird I don't think he's tired' and as I said it he projectiles across the room (sorry TMI), he started screaming and I just scooped him up, both of us covered, me crying like a loon ha!

DH came and held him while I got it together wracking my brains for what was wrong with him? I was downstairs cooling some boiled water for him as it was all I could think of.

Went back up and he was all sleepy on dad so DH just told me to put him into bed, we both thought he must have a bug. He was in there 2mins and did it again.

After we gave him an oz or so of water DH had to go to work, so I just sat with bubba on the sofa, he was sooooo dozy. Then in his sleep he projectiled again, then started kind of dry gagging (like when youve had waaaaay too much to drink - weve all been there!) and was white as a sheet, I felt his head thinking he must have a temp but he was cold and clammy...

This REALLY worried me - I couldn't work out if he was floppy or just sleepy it was horrible. In the end I gave up waiting for the doctors surgery to open and took him upstairs with me so I could quickly get dressed and I was gonna take him to hospital.

I laid him on my bed, recovery position, just while I threw some bottoms on and changed my soaked top.

Then I hear him gurgle.... Turned round and he's grinning at me?! Colour had come back to his face, exactly back to his normal self? I was so confused?

Anyway sorry for the long story - a doctor eventually called me back as I just wanted to know what to do regarding dehydration but I'd had a wet nappy out of him and he'd taken a bottle and kept it down so I thought he must be fine. The doctor reckons a bit of phlegm must have made him gag - I was like 'oooookaaaay thanks for your help!'.

So it was basically this episode that made me google his symptoms, think I wrote 'vomiting, cold and clammy, baby' something like that and found info on FPIES.

He is a very sicky/refluxy baby anyway - and this info said that the mild reaction can be just that, and loose stools - well his nappies have always been hideous but I thought that was normal. But as I was reading about the pale clamminess it was basically saying that was shock?!

So it could just be a coincidence - it has NEVER happened since he's been on formula, his vomiting was the whole reason I switched to formula as an elimination diet thing was taking too long to work out, and I just wanted him better. But he's always been very very sicky, it's constant, all day every day and HVs just tell me it's posseting and you just go 'yeah ok if you say so' but as he's healthy and gaining weight I didn't think it was a problem but after that the other day I'm a bit spooked.

So does that sound like something I should pursue to you guys? Even Dr 'probably just gagged' said a bug/infection wouldn't come and go that quickly....

If you don't mind me tagging on here your thoughts would be appreciated. What with his flat head and now this I'm starting to feel like I'm looking for these things!

Xxxx

[ENMS]

Hi there!

Sorry you have to go through that. It must have been terrifying. I don't have much time now but wanted to ask a few questions

how long has he been on formula?
what formula is he on?
how old is he?
how often did he vomit with breast milk?
when you say his diapers are hideous, what exactly is the issue with them?

In the meantime, here are a few links that I found helpful.

Will be back tomorrow

http://community.babycenter.com/groups/a4859345/fpies_food_protein_induced_enterocolitis_syndrome
http://www.thefpiesfoundation.org/

[PixieD]

Aw hi thanks for coming back - yeah it was scary, I just can't believe how quickly he came back? Don't get me wrong I was soooo glad - just completely baffled, until I found this info on FPIES.

He's been on formula since he was 4weeks - so 14weeks now.

I started him on 'Aptamil First' and I remember the day I gave it to him, I used a carton and he was like a different child it was great, so I went and bought a tub and he went back to normal. I looked into it and apparently the cartons are heat treated which breaks Lactose down more than the powder. So I thought if this is the case I'd look into a formula with less lactose in it and started giving him the 'Aptamil Comfort' with 40% less Lactose, which he seemed better on, still sicky but far less uncomfortable.

He's 18 weeks now.

He was always sick with breastmilk, he was fine for the first two weeks then suddenly couldn't keep it down, had a few projectiles but mainly just a puke here and there (all day long) like he still does now.

His poos are runny, he doesn't go that often either which I'm told is normal with bottle-fed bubbas, sometimes theyre smoother/thicker than others but quite often it's very runny.

I've always had it in my head that he couldn't tolerate something. Especially after the research I did when he was tiny as he was so uncomfortable/refluxy (and Gaviscon is just pathetic - Drs annoy me - so quick to just medicate 'here shove this in his bottle' not try and work out the cause) but I thought I had nailed it, maybe it's the protein though and not the lactose. I can't really do dairy either, I get bloated/wind sometimes heartburn and a runny nose from milk, so I just give it a miss most of the time. My dad was always thought to be lactose intolerant but has recently been diagnosed with Chrones Colitis - I looked into these things but couldn't find anything saying it was hereditary...?

I spoke to Aptamil a few weeks ago as he is getting very hungry - HVs said I should start him on rice and I'm glad I didn't just in case! I didn't really want to start shoving spoons in his mouth yet he just doesn't seem physically ready to me and it's not something I want to rush. I was asking about the Hungry milk, but the Aptamil lady explained that going from Comfort to Hungry would be difficult for him as they're at opposite ends of the scale digestion-wise. She suggested I try him back on First as its still more whey based than the Hungry milk (Comfort is 100% Whey). I have put a bottle of First in here and there - the woman advised one bottle one day, two bottles the next day and so on, but I wanted to take it slower than that, and was going for the second bottle of the day at first (in case he was uncomfortable/sick etc I then had all day to do something or whatever) he seemed to be getting on with it fine, but you can tell he's had it as his sick is different, it's more like cottage cheese, when he spits up on a Comfort bottle it's more saliva-y.

I didn't give him First that morning though, it was the same old Comfort. Weird weird weird, and so scary, I just wonder if something from the First was building up, or if that morning was a delayed reaction to one I'd given him the day before - or if it is all just a huge coincidence and probably won't happen again!

I just don't know.

Thanks for coming back - and those links are brill I've read them before but it's handy to have a link to them as I can never find these things again ha!

Xxxxx

[PixieD]

My posts are so long winded I'm so sorry ha! Xxx

[ENMS]

Hi there,

Obviously I'm no FPIES expert... I've done lots of reading though.  Usually, severe reactions occur 2-5 hours after ingestion. But some can get delayed reactions, although usually they are milder. My DS gets delayed reactions - 4-6 days after we start a solid food things go bad. I always stop the food before he gets to severe symptoms though. You can also have big reactions if you remove an offending food and then introduce it back. 

How long has he been on First?

Honestly it's hard to tell whether it was FPIES or not.  The reaction does sound like an FIES reaction, but the timing seems a bit off

So I think you have 2 choices: either you 'test it' and offer the First again, or you just avoid it for now. 

Obviously, if there is any FPIES risk, I would steer clear of rice cereal (it is the most common food FPIES babes react to), and all of the shortlist of common triggers. I can send you the list if you want. I would also not introduce any solids earlier than 6 months and go very slowly once you do.

Does that make any sense?

[PixieD]

Hiya, yes that makes perfect sense and if you do have the list of common triggers that would be great.

It was just the strangest thing, the severe vomiting, about 1hr 30 after the bottle - which he always has... I'm gonna knock the First on the head.

I am just hoping it doesn't happen again.

Thanks for coming back xx

[ENMS]

Lots of (((HUGS))). I hope it won't happen again .  Feel free to come back and post here or PM me if you have any other questions or if you need support.

The second link is a survey taken by mommies of FPIES babies, where they responded to which food their LO has reacted.

http://www.kidswithfoodallergies.org/resourcespre.php?id=99

https://docs.google.com/spreadsheet/viewanalytics?hl=en_US&formkey=dFJKLUhPUWtYRW5RZk1ESGVMOHlVMkE6MA

[maggie2]

PixieD - has pyloric stenosis been ruled out?

edited to add - the cold and clammy thing/returning to normal quickly thing does sound a lot like FPIES though!  My dd looked so bad they were convinced she had meningitis and even treated her for it.  Then they admitted her and once we got to our room, she was totally fine and the doctor up there had no idea what was going on or why a child looking this good needed to be admitted!!  lol.