Talk to me about FPIES/MPIES and alterna-milks

[TwoBees]

I haven’t been around much lately, so I don’t know if anyone remembers my posts from a few weeks ago about suspicions that DD2 (14 months) may have a milk allergy and asking about the safety of soy milk for toddlers. We saw a pediatric gastroenterologist yesterday who confirmed my suspicions that DD2 is having problems with milk and diagnosed her with FPIES. Fortunately it is relatively mild, no severe Ig-mediated allergic response (no hives, wheezing, etc.) but rather a cell-mediated, delayed dose-response manifesting in eczema, red cheeks, allergic shiners, and vomiting and diarrhea if she has too much milk. Since Lactaid milk led to some improvement including no more vomiting or diarrhea (possibly because the process of breaking down the lactose also broke down some of the milk proteins? not sure about that part?), he suggested that we move ahead to soy, rice, or almond/cashew milk and see if things improve further. Fortunately, we do not have to cut out other sources of dairy such as cheese (she eats lots), yogurt (she eats little), or dairy in baked goods/prepared foods. She also does not have FTT or malabsorption. But it is possible that the FPIES has been contributing to all of her sleep problems.

Does anyone here have experience with mild FPIES/MPIES? And what type of alternative “milks” are best nutritionally? In a previous thread I asked about the safety of soy milk, and I’m not comfortable giving it to DD2 on a regular basis (and I’ve been reading that many kids with milk protein issues also have issues with soy), but it has more calories and protein than the other alternatives. We switched to rice milk last night, but it does not have much protein. Also, is there an issue with arsenic levels in rice milk? I suppose almond/cashew would be my preference but I am not yet sure if I can send that to daycare. Fortunately, DD2 already drinks lots of water.

Sorry this is long and rambling. Any advice is appreciated. Thanks!

[gymnbomb]

We just took DS in for his 12 month visit and our pediatrician said there was really no need for any kind of milk as long as he had other sources of calcium, fats, and proteins. (I did not ask, he is still getting breast milk, she was just mentioned it). My mom was given similar advice when I was young and at first was allergic to and then just wouldn't drink milk. Were your doctors pushing you to find an alternative milk?


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[Katigre]

Can you give coconut milk? That had healthy fats and so delicious brand has good calcium absorption.

If you are still breastfeeding then that would be the ideal milk for your toddler. Our dairy/soy intolerances are a significant reason why I nurse until 2-3 years old.

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[Jacksmommy2b]

We do coconut when we have to use milk but DD's worst FPIES reactions come from grain and soy.

[jse107]

We used rice milk and Neocate JR with DD until she outgrew her issues. She was really reactive to milk, soy, and a few other solid foods. Truthfully, I'd cut ALL dairy out until she's at least 2, and then try again--slowly. You might end up surprised what issues the milk products have contributed to. If you're really concerned and want to really figure it out, then I'd go with Neocate JR or Elasure+. Your ped GI didn't suggest that though, which sort of surprises me.

[TwoBees]

Can you give coconut milk? That had healthy fats and so delicious brand has good calcium absorption.

If you are still breastfeeding then that would be the ideal milk for your toddler. Our dairy/soy intolerances are a significant reason why I nurse until 2-3 years old.

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I didn't think of coconut milk and he didn't mention it. I will ask. He didn't push any kind of milk, just suggested we try it.


We used rice milk and Neocate JR with DD until she outgrew her issues. She was really reactive to milk, soy, and a few other solid foods. Truthfully, I'd cut ALL dairy out until she's at least 2, and then try again--slowly. You might end up surprised what issues the milk products have contributed to. If you're really concerned and want to really figure it out, then I'd go with Neocate JR or Elasure+. Your ped GI didn't suggest that though, which sort of surprises me.

He might not have mentioned it because she is not having serious issues. She is not FTT either, so I'm not sure she needs the other supplements. He did mention that to truly figure it out we would have to cut out all dairy, but that it wasn't necessary to do that at this point if cutting back on dairy is working to mitigate the symptoms. Cutting out all dairy would have to be a slow process so we plan to start small and work our way up to that if necessary. I will call and ask for clarification though.

[Simon]

Personally, if you are able to keep some forms of dairy, then I'd skip other milk. Other than the formulas mentioned above, I don't think any of the replacement milks are that great. Most of them would fill her up (satiate) without giving anything nutritionally better than real food + water to drink. If appetite isn't a problem, them I'd mix coconut and hemp. I agree with the pp that if she is reacting some to dairy, then its probably better to replace it where possible; I'd switch to coconut yogurt if you're avoiding soy, and keep cheese since the alternatives are gross. Our experience with FPIES was much more severe, so we did use Neocate, but if you feel her diet is well-rounded enough without it then I wouldn't worry overmuch so long as you're able to relieve her symptoms.

[KpbS]

We drink coconut milk, Silk brand. There are tons of varieties--vanilla, chocolate, unsweetened, etc. They are delicious and have twice the calcium as dairy milk.

[goldenpig]

We do almond milk and sometimes coconut milk. My #2 has milk protein intolerance and #3 is allergic to milk and soy protein and eggs. About half of kids with MPI are also intolerant to soy protein (he seems to be OK with soy lecithin and soybean oil, because those don't have the protein). I agree, if your LO really has MPI I'd replace the other dairy items with the non-dairy version--coconut milk yogurt, Daiya cheese, Earth balance margarine, etc. It's the milk protein and not lactose, so doing Lactaid milk doesn't help. Also look for hidden dairy like casein and whey. A lot of breads have milk or soy flour in them so I get one (Oroweat Potato Bread) that doesn't have milk/soy. Like Katigre I breastfeed until at least 2 so they would get the benefits of real milk. I'm trying to wean my son who's turning 2. He still reacts whenever I accidentally consume trace amounts of soy/dairy/eggs. I can't wait until he's weaned so I can go back to eating whatever I want!

[MSWR0319]

We do almond milk and sometimes coconut milk. My #2 has milk protein intolerance and #3 is allergic to milk and soy protein and eggs. About half of kids with MPI are also intolerant to soy protein (he seems to be OK with soy lecithin and soybean oil, because those don't have the protein). I agree, if your LO really has MPI I'd replace the other dairy items with the non-dairy version--coconut milk yogurt, Daiya cheese, Earth balance margarine, etc. It's the milk protein and not lactose, so doing Lactaid milk doesn't help. Also look for hidden dairy like casein and whey. A lot of breads have milk or soy flour in them so I get one (Oroweat Potato Bread) that doesn't have milk/soy. Like Katigre I breastfeed until at least 2 so they would get the benefits of real milk. I'm trying to wean my son who's turning 2. He still reacts whenever I accidentally consume trace amounts of soy/dairy/eggs. I can't wait until he's weaned so I can go back to eating whatever I want!

Not trying to hijack the OP's post, but how do you know the difference betweens #2's MPI and #3 actually being allergic? DS2 has MSPI as an infant and was on Elecare. He seemed to have outgrown it, but still has a lingering eczema type rash on his face that leads me to believe otherwise. His actual allergy test comes back negative, but was curious if there was some way to diagnose just MPI vs an allergy.

[hellbennt]

you can get privately tested - there's a difference b/t allergy & intolerance IgG & IgE
there's links from here - look for Best explanation of Intolerance link & how Neocate works...
http://infantreflux.org/formula-feeding-and-reflux/

[goldenpig]

Not trying to hijack the OP's post, but how do you know the difference betweens #2's MPI and #3 actually being allergic? DS2 has MSPI as an infant and was on Elecare. He seemed to have outgrown it, but still has a lingering eczema type rash on his face that leads me to believe otherwise. His actual allergy test comes back negative, but was curious if there was some way to diagnose just MPI vs an allergy.

Sorry I was typing kind of fast and wasn't clear. Neither of them have the typical IgE mediated anaphylactic allergy. It's a non-IgE delayed type hypersensitivity/protein intolerance. #2 and #3 both have MPI but #3 has MSPI plus egg protein intolerance. He was skin tested, and came up borderline positive on milk, soy and eggs (I think the cutoff was 5 mm and he was 4 on milk and soy and 5 on eggs). I think it's probably because he has a delayed response that he didn't react more strongly on the skin tests. I think he also had a reaction when I fed him shrimp so I'm avoiding that for now. They're ok with nuts though, thank God. They don't need epi pens. It's a delayed reaction--after an exposure it takes several hours or a day or two to see the effects...typically fussy and waking up frequently arching and crying that night and the next couple nights, then the next day the eczematous rashes start and last for about a week. I'm pretty careful, but I do accidentally get exposed sometimes and both of them reacted to trace amounts. Like I ate one lettuce cup from CPK and I think it had some soy in it and he reacted. It's very weird, #3 always has the same rash--a bumpy flesh colored patch on his chest, red cheeks with fine red bumps, red plaques near the insides of his elbows, red ring around his anus and sores in his butt crack. #2 got the same face and diaper rash and fussiness as a baby if I accidentally got exposed to dairy, but when he got older when I tried feeding him dairy (ice cream and mac and cheese), it was an itchy rash on the back of his neck and bleeding cracks in his earlobes. I haven't tested #2 in the last 6 months because the sight of his ears bleeding made me want to cry! He does seem to tolerate small amounts of baked dairy like cupcakes at birthday parties, so I will probably try another dairy test after he turns 5, but his pedi allergist thinks that he may not outgrow it if he hasn't already. :( And #3 seems even way more sensitive than #2. I asked the allergist if there was any type of desensitization program (my niece successfully went through one for her peanut/tree nut allergy), but he said no because it's not a true IgE mediated allergy but an intolerance. He can't seem to explain why all of my kids had it (DD had MPI but grew out of it)--neither DH or I have food allergies.

[Simon]

Not trying to hijack the OP's post, but how do you know the difference betweens #2's MPI and #3 actually being allergic? DS2 has MSPI as an infant and was on Elecare. He seemed to have outgrown it, but still has a lingering eczema type rash on his face that leads me to believe otherwise. His actual allergy test comes back negative, but was curious if there was some way to diagnose just MPI vs an allergy.

We have MFPI and test negative on all IgE allergy tests (the blood and skin tests used in allergists offices) for foods we known are problematic. My son's reaction is very delayed but the long-term consequences are very severe. I'm sure we're an unusual case, but will simply say that you cannot always identify MFPI with the traditional allergy tests. Eliminate and observe (or use other forms of testing) are the only options I know of.