Moms of Children W/ FPIES: Food Protein Induced Enterocolitis Syndrome

Updated on April 22, 2008
K.C. asks from Edmonds, WA
16 answers

I am looking for anyone who has a child who has this syndrome. Enterocolitis is inflammation involving both the small intestine and the colon (large intestine).
FPIES is a immune reaction in the gastrointestinal system to one or more specific foods, commonly characterized by profuse vomiting and diarrhea. The most common FPIES triggers are cow’s milk (dairy) and soy. It is different from an allergy or insensitivity- they can not digest the proteins in milk and soy.
A child with FPIES may experience what appears to be a severe stomach bug, but the "bug" only starts a couple hours after the offending food is given.

We suspected that my daughter had this when we tried to give her milk based formula and then soy based formula at 2 months and then again at 5 months to help suplement with breast milk- with in 2 hours she was vomitting and would continue for hours.
I had a breast reduction surgery 13 years ago and my milk production can be very sparatic. We decided to keep her breastfed only as I was too scared to even try even the formulas they give for this, I have had a friend even donate milk to me in times of total crisis. She is approaching a year old and my milk supply is pretty much gone. I have tried everything to keep it up- fenugrek, tea's, oatmeal, water, more frequent pumping but I work full time and is difficult to keep up the schedule. I can't seem to get any answers from anyone on WHAT kind of milk I can give her to suplement what I have if she will not take this formula- Alementum (which my Ped says tastes horrible). The allergist recommend rice milk (not the same kind of nutrients)? In most cases they grown out of this by the age of 3 but what do I do in the meantime? Who do I go to discuss this? Any suggestions would be helpful. The reaction she has had is so scary and can be serious. I feel horrible that I am running out of milk.

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So What Happened?

I wanted to thank everyone for all the advice and support. I have some good things to try and have an appointment with a nutritionist in a couple of weeks which will help as well. The lactation nurse today said that I can cut way back on the breast milk and it's totally fine which takes a lot of pressure off too. Thank you all so much. K.

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T.V.

answers from Seattle on

My son has a dairy allergy but we could never get him on formula either because he is primarily breastfed. I switched him to soy but with all the commotion over that I started him on rice milk and he likes it sometimes I think even more than the soy. The rice milk we get is enriched with vitamins and minerals. I have asked his pediatrician and she agrees its better for him than the soy since it has vitamins and minerals that the soy lacks. Good Luck!

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K.W.

answers from Portland on

We have a similar problem with my 19 month old; goat's milk did NOT help because the same protein, casein, is in goat's milk as in cow's.

IMHO it's not that they need a milk-like substance to drink; it's that you need something you can use in cooking so that they aren't sitting around eating rice cakes all day. Rice milk works well in pancakes etc.

For me, any dairy/soy that *I* consume bothers baby, so it's been a long road. So I would try oat milk, almond milk if I were you.

A human milk bank might work for you (it wouldn't for us, since we'd have to know the donor was dairy/soy-free) but there *are* formulas especially for this. I sure hope one works out for you!

2 moms found this helpful
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E.Q.

answers from Portland on

ask bout oat milk... im not sure if infants and drink it or not... but its an idea...

1 mom found this helpful
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D.D.

answers from Seattle on

Some people swear by goat's milk which can be purchased in a health food store. Raw goat's milk is supposed to be the closest to human milk.

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L.D.

answers from Portland on

There is a special formula for this problem. It is prescription. We used if for our middle child. If you have insurance that covers Rxs, it will cover this. I can't remember the name (it is made in the UK somewhere) but can be ordered through a pharmacy. I would call your doctor and ask, or call the Providence Neuro.Child Center at Providence Hospital. The pedi dietician there prescribes it. Rice milk is fine as a beverage, but doesn't have enough nutrients to be a food source. L.

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R.D.

answers from Anchorage on

Do not know anything about FPIES, my son was alergic to milk but could dring goat milk.? Good luck

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J.W.

answers from Seattle on

I know it may sound crazy, but goat's milk. Some health food stores may carry it. My great grandma swore by it, my Dad had it. And when I took my daughter to visit my great uncle who had goats, he said to try it as she was 13 mo old and I was still nursing. So we did, she loved it and it was great. There's something about it that is similar to human breast milk, or so they say. Give it a try after you talk with your doctors.

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L.M.

answers from Portland on

If she tolerates the rice milk use that. If she does not though I don't think I would give her any milk like product. I have friends that didn't give their child milk do to various reasons and their kids are doing fine. If she can have other dairy give her that.
L.

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H.B.

answers from Seattle on

I don't know anything about this syndrome, but since your daughter is one and probably eating a variety of solid and table foods, I would think that a nutritionist could work with you to devise a diet that avoided milk products but still provides all the essential nutrients your daughter needs. By the age of one, while most parents do still offer their children bottles of formula, breastfeeding, and most commonly cups of milk, none of these are necessary to a healthy diet for a child that can eat a variety of foods and is no longer reliant on a liquid diet. You've already made it through the toughest stage!

And I want to say, a huge GOOD FOR YOU for making it with breastfeeding this long - I wasn't able to make it a full year with either of my kids, and didn't have half the challenges you have had! You should be so pleased that you were able to give your daughter that.

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K.E.

answers from Anchorage on

Hi there!
My little one has milk protein sensitivity too... she's 4 months old and I EBF for the same reasons! I don't even wanna try formula... not that she takes a bottle anyway!!! Anywho - I think she can tolerate soy because I do have it in my diet... but dairy is a BIG huge no no!! Rice milk would be your only other option (that I know of) for milk -- however, I did want to say that in general... if she won't take other milk, it's not absolutey necessary... as long as she gets her nutrients from other things in her diet, it will be ok. Most kids grow out of this by age 1... another group by age 3 and some are stuck with it :o( We get mucous, green, smelly and then bloody stools with any milk proteins -- I'm not sure if your allergy is something different? I've only heard of milk protein being the culprit... A large portion of kids with the milk allergy do also have the same allergy to soy... but have you tried soy formula? It's not always both...
The Isomil/Nutramigens are stinky and icky... but she might take to it - you never know (if you haven't tried it...)
Sorry if I'm not much help, but I just wanted to say you're not alone :o)
There is a lot of info on the web if you google search also!

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J.C.

answers from Anchorage on

I don't know the details of the syndrome, but I recently read that Goat's milk is the closest thing to human breast milk. In my health food department there is even a goat milk formula, but you could try it straight too. Check with your doc., or perhaps a midwife.

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A.V.

answers from Portland on

you might try a naturopath. In Portland, Center for natural healing, (Dr Milner) might be able to help with some alternate formulas, I know they are available, maybe even through the pharmacy. He may also be able to help you with the nutrient needs of the child in a liquid base, then you could give rice milk, just as a drink. I'm not sure that they require a formula after a year.

And by the way, good for you for the effort put into breastfeeding with all your obstacles.
A.

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J.G.

answers from Bellingham on

I just want to say GOOD JOB!!! You have kept up challenging breastfeeding for this long. I don't know anything about your poor babe's condition, but I agree with the other moms, goats milk is worth a try, it's closest to human milk. I know you want to avoid nuts due to allergies, but you may want to experiment with a teaspoon or two of a nut milk, see what happens. There is also hemp milk and oat milk. As far a breastfeeding goes, you would have an easier time if you didn't have to pump it all. Breast pumps are wonderful inventions, but unfortunately they don't suck just like a baby. People I know that have pumped for a full time job (or even part time) always had a hard time keeping the supply up, it slowly dwindles away. Hopefully you can start part time soon, it may help nursing her more. I wish you luck!

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L.L.

answers from Seattle on

My son had a milk and soy protein intolerance until he was about a year old, and we used oat milk and hemp milk with him. To me, the oat milk is more palatable (I drank it occasionally), but the hemp milk has slightly more fat (i.e., closer in fats to breastmilk) and has lots of omega 3s (also more like breastmilk). My son took both oat milk and hemp milk just fine, and he'd only had breast milk up until that point. (I began oat and hemp milks with him at about 10 months.) My guess is that you could pretty easily transfer your daughter to either one without much trouble. You can buy either at PCC or Whole Foods, and oat milk is less expensive. Best of luck to you. Just having a son with milk and soy protein allergies for a year, and breastfeeding him during that time, was very challenging for me, so I know your situation must be even more trying. You and your daughter WILL get through it! :)

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J.T.

answers from Seattle on

Did you know that there are several human milk banks in the United States that could provide donor milk for your baby? Google the Human Milk Banking Association for information. Perhaps it would even be covered by insurance because of your daughter's medical condtion. Best wishes.

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R.K.

answers from Anchorage on

I have no direct info but there is a wonderful yahoo group I use to be active on called [email protected]____.com; there is at least one mom on there with a FPIES child. Seriously the group is wonderful... my son has outgrown most of his allergies so I have been inactive for over a year... anyway my son drank rice milk, I bought the enriched kind as it has more nutrients, and he did well with it.. he is smaller than my other kids but as he is now no longer allergic he has started to grow more so there is hope :) the main thing is to get enough healthy fat in their diet.. Which can sometime be accomplished by adding olive oil to the kid’s food... it worked well for my son at first then he started to not accept it so much so I stopped... anyways check out that group and good luck! Becky

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