Fpies, mspi, mfpi?

[SARA777]

Is this what folks here have? It seems like most folks here have MFPI which is supposedly a sub-case of FPIES? Only, w/FPIES eczema is not a problem? I'm thinking of l.o. has fpies, but he's got eczema. He hasn't tolerated solids well at all. Throws up or spits up and gets refluxy and the diapers get runny. That sounds like fpies to me, but he also gets eczema w/the classic allergy ring when I've eaten something that he's intolerant too. I'm exclusively breast feeding him. Tried a tiny bit of bone broth - he got a little refluxy so I"m holding off on that for when he's a little older (he's only 9 months), and I"m going to try the Neocate Nutra as a "solid" for him.

FPIES sounds really scary. So far the amt of throwing up is nothing like the videos I saw on You-tube of an FPIES baby. However, I"m worried that should we go w/solids in a larger way, he may end up throwing up and dehydrating. None of you seem to have a serious fpies baby? So, maybe I'm "guessing" my l.o. is FPIES, but he's really not? Just a mild "intolerance".

How goes this road? FPIES OR NOT, FOLKS? Are your babies FPIES?

[kjbrown92]

I'm not sure what that is I guess. Multiple food protein intolerance? Though I don't know what FPIES would be... food protein intolerance e syndrome?

My kids have multiple food intolerances but it isn't just to the protein, since they react to all parts of the food. That sounds to me like a diagnosis that a GI would make when they're not sure what the issue is.

[lil_miss_understood]

Originally Posted by kjbrown92

I'm not sure what that is I guess. Multiple food protein intolerance? Though I don't know what FPIES would be... food protein intolerance e syndrome?

My kids have multiple food intolerances but it isn't just to the protein, since they react to all parts of the food. That sounds to me like a diagnosis that a GI would make when they're not sure what the issue is.

[mamafish9]

I dislike medical "diagnoses" that are really just a description of the symptoms, which is what those letters sound like. Would you do anything differently based on which one it is?

[rhesp1212]

My DS has FPIES and it stands for Food Protein Induced Entercolitis Sydrome. Like the original poster said, the typical scene of an FPIES baby is lots of vomiting. However, mine doesn't have profuse vomiting and still got the diagnosis. He has really bad reflux, gets delayed gastric emptying, spits up and gets the red ring on his bottom when he or I eats an offending food. The spit up got slightly better with solids only because they are heavier than breastmilk. But, once we started solids, he also started breaking out in a rash on his face along with the GI symptoms.

We have been on TED for 5 months now and he has failed everything we have added back in. When we are at baseline, all of his symptoms go away! We see a GI specialist and a pediatric food allergy specialist at the children's hospital here. The allergy specialist told us that FPIES babies do best on fruits and vegetables, but some can tolerate some meats. And interestingly enough, alot of FPIES babies have problems with starchy foods like potatoes as well. My DS can only eat organic turkey, small amounts of lamb, pears, zucchini, yellow squash, sweet and white potatoes, and green beans. He can only tolerate olive oil and nothing else. We are currently trialing coconut milk and oils and so far so good. He even failed a Neocate trial!!

If you have any other questions, I'll be happy to answer to the best of my knowledge (I'm still learning about this too as this is a recent diagnosis for us in the last couple months).

Valerie

[kjbrown92]

so it's basically a lot of food intolerances... in doctor's terms. But here, we just call it life. Not to minimize it, I'm just saying...

[kjbrown92]

And totally out of curiosity, how do they know it's the protein? For instance, when DS was a baby, they said he had milk/soy intolerance. They didn't say MSPI, which is in vogue now. And he does react to more than just the protein, but they wouldn't have known that then. Without testing to see what part of the food they react to, are they just guessing it's the protein, just because allergies are to the protein? I'm just wondering... because I think it may be a misnomer.

White potatoes are high on the allergen scale, anyway, as a nightshade. I wonder if starches in general are hard to digest, like grains?

[mamafish9]

Potatoes are one of the biggest starches, size wise, bigger even than most grains, so I think that's why they are particularly hard to digest. Sweet potato is a lot smaller starch molecule, and they seem to be better tolerated by many people here.

[rhesp1212]

FPIES can be caused by both true allergies and intolerances.

[SARA777]

Fpies, mspi , mfpi - oh my!

THANK YOU for the responses/insight on your views/exp. i guess labels aren't a good catch-all for what's going on as it seems to be much more or a combination of intoleranes/allergies/etc. I just saw this video on You-tube and was shocked. How depressing. justjackingaround.blogspot.com/2008/02/video-of-fpies.html

got a stomach ache from watching it - this seems to be a severe form of "fpies".

Also, it seems classic fpies doesn't present w/eczema, and the babies don't react to breast milk. But then w/our probs, combinations are prob more "typical"....maybe if you have a combination, then the "fpies" reactions are not severe. Don't know.

Thank you for the support. Looks like I"ll be here for awhile. It really helps to know that I'm not alone & to see strong moms out there dealing with these very tough probs.

[kjbrown92]

My DS projectile vomited at birth from milk, then soy, then the GI thought he outgrew them, but they came back. He's currently off about 30 foods. He's 9yo. He's never had eczema, but he's had over the years... vomiting, diarrhea, rashes, bedwetting, temper tantrums, inconsolable crying, stomach pains, reflux, and more. My DD2 (4yo) is also off about 30 foods (not the same foods as DS, either). She's had eczema, vomiting, diarrhea, folliculitis, bedwetting, reflux, etc. Not sure what acronym it is. Both of them have been to GIs. The one for DS declared him cured. When DS got the intolerances back, I didn't go back. The one that I took DD2 to said she was fine on the elimination diet, and not to try and add anything back for at least 6 months. I waited another 18 months because I was so scared to try. But again, both of my kids are intolerant to more than just the protein. For instance with milk, it's not just the casein, it's also the whey and the lactose and every other part of the milk.

We welcome you, unfortunately. We wish there weren't any other people joining this club! If you're up for it, the chat thread is where a lot gets discussed, but sometimes it's hard to follow.

[WuWei]

Try Bubbies sauerkraut juice to help improve stomach acid, digestion of proteins and bioavailability of nutrients.

Pat

[SARA777]

What was that movie w/the possessed little girl? Ummmm. just can't think of it becuase i'm brain-dead from lack of sleep. And, my doctor told me that by 8 months, I should see some relief w/the l.o. sleeping thru the night - ba ha ha ha ha.

Yeah, this is tough. You've been TOUGH! It's heart-breaking to watch your l.o. want to eat something and be so gingerly about it because he's afraid it will hurt his stomach. Sheeesh. Being a mom to these babies is the toughest job ever. I am wiped, and I have not even been doing this long.

[kjbrown92]

My kids slept through the night as soon as all the triggers were removed from their diets! So it does happen.