Best formula for milk protein intolerance--soy vs. Nutramigen/Alimentum vs. Neocate?

[goldenpig]

DS has silent reflux. He tested negative to milk and soy allergens on skin testing and RAST, but I still think he has milk protein intolerance. I am on a dairy free diet, but he tends to have periodic bouts where he starts refusing to feed (both breast or pumped milk), waking up a lot at night, and getting rashes on his face and diaper area. This lasts for several days to a week usually. Often I can trace it to my having accidentally ingested some dairy...like small amounts of butter or milk hidden in foods like cake or chocolate or bread or cereal that "contain milk ingredients". I can't believe how sensitive he is and keep wondering if I am crazy, that a few bites of something questionable would cause him to react so strongly. Anyway, he's in another phase of these symptoms and I'm thinking about buying some formula as a backup in case he doesn't get better quickly. I don't want to stop breastfeeding him, but I also don't want to torture him. But I'm not sure which formula to get. I read that 50% of babies with milk protein intolerance are also intolerant to soy or that they can develop soy protein intolerance if you feed them soy, which would be bad. I also read that Nutramigen and Alimentum still have casein and other milk proteins in them (although hydrolyzed) so I'm not sure if that's really any better. Then there's Neocate which is the least allergenic but most expensive, but I'll buy it if it's the best. But I also heard that these formulas all taste nasty, and DS isn't used to drinking formula so I'm not sure he'll accept them.

Does anyone have any experience with any of these formulas, in terms of taste and whether they helped your LO with milk protein intolerance? Thanks!

[AnnieW625]

My reflux baby has been doing well on lactose free Similac Sensitive or Target's Up & Up brand. She has been on either one of the two full time since August. We didn't try any of the specialized formulas as our ped. didn't think it was really necessary, and honestly because I heard from others I know who used that they stunk. DD2 as long as she has her Zantac 2 x daily is a happy spitter.

I don't want to down play the possible allergy issue (and I am not an food allergy mom), but is he teething? Is he cloth diapered? Is he using diapers with dry max (Pampers Cruisers)? My DD1 who has no food allergies and had no reflux would go on hunger strikes, and her cheeks would get flush when she was teething. She didn't have a rash until we used non unscented baby wipes, and we switched to the Pampers Cruisers (pre Dry Max ones, but she still got a rash from the dry weave in them). DD1 was also sensitive to diaper creams (A&D Cream made diaper rash 10x worse!). For DD2 she was allergic to whatever detergent the diaper service was using and had a really bad diaper rash or yeast infection for most of the time we used the cloth diapers. Just a few thoughts that might help narrow the cause down.

Also have you tried feeding him any type of solid dairy product yet? Often cheeses, and yogurts are easier to digest than regular milk protien so if his skin tests came back negative can handle those then dairy may not be the issue. Could wheat be a cause?

Kind of a roundabout answer, but I thought it might be helpful.

[BabyMine]

TT had reflux bad. He was put on Zegerid and we were then allowed to use regular formula. Before that we tried everything. His GI doc said to stay away from Nestle Good Start. Just know the fist 2 do have some milk in them. TT was on Nutramigen in the very beginning beginning and didn't mind the taste.

[HIU8]

DS was on alimentum. I think between the 3 it's just preference.

[crayonblue]

My middle daughter was on Neocate for years. I have no idea how it tastes but it didn't smell bad at all.

[BabyMine]

I love this forum for DC with Reflux.

http://www.infantreflux.org/forum/

also www.Marci-kids.com (http://www.Marci-kids.com)

[KpbS]

Ok, Alimentum and Nutramigen are 2 different brands of hypoallergenic milk-based formulas. Think Coca-Cola and Pepsi that work well for many (not all) milk+/milk soy allergic babies. Some still cannot tolerate these formulas and need an elemental formula like Neocate. Neocate is an amino acid based formula that has no milk proteins (intact or otherwise). Neocate is very different from Nutramigen and Alimentum.

These formulas are very different tasting than breast milk. They can be strong smelling/tasting and some ebf babies will initially reject them. It took a while for DS1 to accept the hypoallergenic formula I weaned him to at 6 mo. He had never had any formula prior but we were had tried everything and he needed the formula. He was reacting to many, many proteins in my milk (not typical). Don't think that you are crazy if your DC reacts to trace amounts of dairy in your diet with rashes, increased waking, reflux, etc. It is entirely possible!!

Feel free to PM me if you wish.

[Elilly]

DS was on neocate. It was super expensive. As in $150 per week!!!! It is, however, the least allergenic and is used for a variety of medical conditions. I'd try a hydrolyzed milk formula before going to neocate if he can tolerate it.

[daisymommy]

I would stick with breastfeeding, and do whatever you must to make it work. I say this from experience.

I gave up after 2about a month, and then we spent MONTHS going through every single formula out there--I am not exaggerating! trying to find something that worked for my son (#1). If I had of known it would be so hard, I would have stuck with breastfeeding. It sure would have been easier in the long run, and cheaper too. At one point both our Ped. and a lactation consultant asked if I wanted to try re-lactating, because they knew that breastmilk would be easier for him to digest and handle. But it had just been way to long since I had stopped, I knew there was no going back.

So, my son had colic caused by reflux and a milk protein allergy (and was allergic to soy as well!). It was a rough first 4 months until we figured out what all the problems were, got him on medicine for the reflux, Alimentum formula--which was like $8 for each ready to feed can PER DAY, because he couldn't tolerate the powder--very common for reflux babies, he really didn't like it (it smells bad, tastes bad, and stains everything grey when they spit it up...and Neutramigen is the same way)...so for a while he would try to not drink it at all, until hunger forced him to (you could hear his stomach growling) so he would drink it but cry :( His problems mostly went away, but he did much better once he was on solids and didn't have to drink so much of the formula to grow. Poor kid. I wish I could go back in time and have a do over.

[TwoBees]

DD has bad reflux, and we finally got some relief with Axid. We thought she had a milk allergy but decided to try lactose-free similac sensitive before paying $$$ for the hypoallergenic stuff. It worked! I recommend giving it a try.

[WolfpackMom]

DS had reflux and had/has milk protein intolerance. Axid and Enfamil Gentlease or Target's Generic version of enfamil has worked for us when we formula feed (we do both breast milk and formula). I would try one of the less expensive formulas with broken down milk proteins before going the route of those others ones first.

[ohiomom1121]

DS2 has reflux too and is on medicine. He spits up after nursing so I started trying formula for supplementing and he does wonderful on Good Start and never spits it up. I ran out and used a sample of Enfamil and he would projectile spit up most of it. I would definitely try some regular formulas before going to the ones you mentioned. My DF tried one for her DD when they suspected a milk allergy and the baby completely refused it. She said it smelled horrible as well.

[goldenpig]

Update: He always has the feeding refusal/increased waking/rash issues all at the same time so I'm pretty sure it's the dairy. He's in Huggies and doesn't ever get diaper rash except along with the other reflux symptoms. And the face rash is on his forehead and cheeks so I don't think it's teething. I think it was because I had a little bit of cake that had butter in it, and some milk chocolate in the Halloween candy, and the nanny fed him some pancakes that had milk & butter in them. Unfortunately he absolutely refused to drink soy formula or Alimentum. We tried several times but you're right, it just tastes too different for him. The Neocate is only sold in 4-can packs so I don't think I'll get it yet since he won't drink formula. We're still plugging away with the breastfeeding/breastmilk. He is slowly starting to get a little bit better. I guess I just have to be super vigilant about the dairy. Thanks everyone for your helpful advice!

[Katigre]

Both of my babies were hypersensitive to milk and soy in my diet - one bite of something that had butter or milk as an ingredient (no matter how small) would result in obvious GI symptoms - puking spit-up, diaper rash, acidic and mucousy poop, etc... I had to be crazy cautious about whatever I ate - thankfully there are so many more dairy-free options now than there were four years ago with DS. The allergy test/skin test/RAST test won't show results because you're dealing with GI reactions/intolerances and not true allergies.

If you have to do formula infrequently, I might try soy and see how the baby does. I personally wouldn't feel comfortable doing soy formula full-time though. But 25% of babies who have a milk protein intolerance are also unable to handle soy (because the proteins are similar - hence the reason soy is a subsitute for cow's milk in formula). Nutramigen and Alimentum are just two different varieties of hypoallergenic formula - I'd get whichever your baby tolerates best (and like others have said, be prepared for some resistance because of the huge taste difference from breastmilk).

HTH!

[jse107]

I've done both routes. DS was silent reflux, medicated with Bethanechol and Prilosec, and did really well with Nutramigen. He outgrew MSPI around 14 months.

DD, also silent reflux, was on Nutramigen from birth, and eventually we had to go to Neocate around 4 months, due to continued MFPI. She outgrew her issues around 2.

Personally, I'd start with the Nutramigen and see how that goes for a couple of weeks. Don't go to the Neocate unless you have to--it's very expensive and really for babies who can't tolerate anything else.

Just read your update! Sounds like you've narrowed it down a bit. If you need to transition to formula, you could always mix some with BM until he tolerated the taste more.