Author Topic: Food Protein Induced Entero-colitis Syndrome (FPIES)  (Read 11592 times)

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Offline maggie2

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Re: Food Protein Induced Entero-colitis Syndrome (FPIES)
« Reply #30 on: August 12, 2012, 14:59:23 pm »
Elise - interesting link!  The one with the pie charts - I'll tell you..  I wish doctors would listen.  I was basically forced to allow the docs to place an ng tube and feed only elemental formula (as opposed to me continuing to breastfeed like I had been doing for 9 months with no reaction - they literally told me she could die if I breastfed her again  ::)).  I keep telling them that the formula was making her SICK!  She would retch and vomit with every single feed, but it wasn't like her sweet potato/squash reaction.

Anyway - looks like elecare has a decent amount of reactions associated with it (this is the formula she was on).  The doctor kept telling me that there was no way she could react to it.  I don't know - maybe not a true reaction but I feel better knowing I wasn't being dramatic.  She literally couldn't keep the stuff down.  It was horrendous - the sounds she would make as she tried to get that stuff up...

Urgh - this is bringing up so many old but still raw emotions!!!!

Offline PixieD

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Re: Food Protein Induced Entero-colitis Syndrome (FPIES)
« Reply #31 on: August 12, 2012, 17:29:26 pm »
Hi Maggie :) nope no ones seen him really, when his 'reflux' started I took him to the docs and got given Gaviscon Infant and sent on my way. Since then I started looking into why he was so uncomfortable and thought l had nailed it with the Lactose thing. He still throws up all day but in himself he seemed better so I thought that might have been it.

Then I started him on a very infrequent bottle of the First milk here and there and suddenly he had that funny turn but I'm sure the bottle I made up for him that day was Comfort... Either way I've gone back to the comfort completely now just in case, I was scouring the ingredients and noticed that Comfort says 'Hydrolysed Whey' and the First says 'Demineralised Whey' so not sure if that's made a difference, by the looks of it (from google lol) it seems Hydrolysed is more broken down...

Ugh I dunno - I was literally hospital-bound cos I thought something awful was happening to him I really did, he was THAT awful looking/acting, then I turn round and he was fine - that quickly... Completely back to normal in about 3hrs from start to finish... Weirdest thing.

So yeah I dunno - ill look into what you said though, I've always had a feeling something wasn't quite right - thank you :) xxx

Offline Amanda5555

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Re: Food Protein Induced Entero-colitis Syndrome (FPIES)
« Reply #32 on: August 13, 2012, 16:10:23 pm »
NO expert here but thought I would chime in about the projectile vomitting. True projectile vomitting is so forceful it shoots across the room. If an infant has that there should definatley be further investigation for sure to rule out stomache emptying issues like pyloric stenosis, and food intolerances reactions.   :)


               

Offline PixieD

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Re: Food Protein Induced Entero-colitis Syndrome (FPIES)
« Reply #33 on: August 13, 2012, 21:45:25 pm »
Yup that's it, the first time he had his dummy in so it kinda squirted out in all directions before shooting the dummy out and going up into the air - so frightening... And he did it and did it until he was dry-heaving like when you've had too much alcohol... He was soooo exhausted he did it in his 'sleep' (not sure he was actually asleep, more like resting) he was on my lap and it shot out, right past me, across a three-seater... Went all grey/pale looking, cold and clammy, I decide to take him to hospital, look round and he's come back, colour in his cheeks, clamminess gone... So strange.

I'm watching everything now, I'm sticking with the comfort and if it DOES happen again I'll get him checked out - I read that it can't be diagnosed if it's not happened more than once? I personally think he's reacting 'mildly' all the time (only because of something I read on the kids with allergies info), my friend's baby, same age same formula has much 'firmer/smoother' stools, I always thought LOs nappies were normal but now I'm not so sure about that either.

That said, he is thriving, and something may have gotten into him that he just had to get out and it's nothing and I'm over reacting... I can only keep my fingers crossed that it doesn't happen again and when it comes to solids we'll go reeeeeeal slow....

What's Pyloric Stenosis? Xxx

Offline ENMS

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Re: Food Protein Induced Entero-colitis Syndrome (FPIES)
« Reply #34 on: August 14, 2012, 02:46:56 am »
something may have gotten into him that he just had to get out and it's nothing and I'm over reacting

maybe, maybe not. I always thought I was overreacting but always ended up totally right. your momma instinct is the best thing to rely on at the moment. :)  it is the right thing to be careful for now (IMHO) and to pay close attention.

Here's more info about pyloric stenosis
http://kidshealth.org/parent/medical/digestive/pyloric_stenosis.html

lots of (((HUGS)))
Elise