Elemental formula and problems

[heatherdeg]

Actually, I'm not sure Neocate is "elemental".

Adoptive daughter came to us at 12 days old. Presumably healthy but she was not--she was drug-exposed (opiates--we've fostered infants with opiate exposure before so really, no biggie). We didn't find this out for a few months and in the meantime, she had what looked like wicked food allergies and wound up on Neocate.

Once on Neocate, she had diarrhea. This is absolutely the opposite reaction it is known for having. Any infant we've had on Neocate has come with standard orders for 1-2 oz/day of pear juice (depending on their size & age) to attempt to fight off the constipation.

So that baffled my very laid-back non-vaxing ped.

When we found out she was drug-exposed, we thought maybe the stomach issues early on WEREN'T food problems, but drug "backlash withdrawals" that upset her stomach really bad. To this day, we still don't know the drug levels and therefore have no clue how realistic this was. But at 1yo, we attempt to move her off of Neocate and onto regular formula and it fails miserably.

We are now at nearly 16mo. She doesn't eat enough table food really to rely on it as her sole diet. Not by a longshot. So formula is still her main source of calories, etc. She recently had a week of wicked diarrhea and although there's a stomach bug going around, doc says it doesn't last a full week of wicked diarrhea and vomiting.

Thing is: this is the same time she got wicked diarrhea last year (but it went on for a month last year vs. a week this year).

Doc felt strongly that her weird response to the formula was somehow related to her neurological issues (she had some delays, but is really doing well now). He's now revisiting that something isn't working right.

Anyone have thoughts on this?

Also, we're going to move to Neocate 1+ (more calories than infant version) or Neocate Jr. (same calories as 1+ with more minerals/nutrients).

Frankly, I'd love to just have her OFF formula. Bfing isn't an option at this point given her age. Thoughts on that?

[mrsfru]

Well, here's a link to the ingredients list on Neocate's website:

http://www.neocate.com/aaa_neocate/6...nt-ingredients. and/html

The very first ingredient is "corn syrup solids"...second is safflower oil...third is a combo oil (coconut and/or soy)...after that it's all "elemental" proteins.

My first thoughts are that she cannot tolerate fructose very well and/or is intolerant of corn. Corn syrup is pretty much totally fructose (and made from corn via chemicals). Kids who can't tolerate this generally have diarrhea and tummy upset w/large amounts of juices too, esp apple (pear and white grape would cause less of reaction, b/c they technically have less fructose). Safflower and soy oils aren't nearly as likely to cause problems, even if a child is allergic to soy, the oil alone may not be a problem. Coconut oil, OTOH, may be a problem for some (I'm intolerant of large amounts of coconut--even to the point of not being able to use laundry detergents w/"natural" surfactants from coconut oil.

I'm betting on the corn syrup solids being the problem. It sure would have been for my first son, as he does not tolerate large amounts of fructose, and he had diarrhea every day for a year until we went to the GI and figured it out.

FWIW, there are two different kinds of fructose intolerances. One is called something like "hereditary fructose intolerance" and the other is just a general thing (if I remember correctly). One is fairly serious and means staying away from all fructose, pretty much 100% for life, and the other means avoiding the amount that triggers diarrhea. My son obviously has the general one of just not tolerating large amounts. You can look them up, and bring up the issue w/your ped. A ped GI can order some testing to determine if one of these is a possibility.

At any rate, if she were mine, I would pull her totally off of the formula...at least for now...give her rice milk and add MCT oil yourself (your doc can prescribe it or you can purchase a cheaper but almost identical version at a health food store) and try to get her to eat as much as you can of generic one ingredient foods that are unlikely to cause reactions, such as jarred meats and veggies.

If the diarrhea cleared up after 2-3 weeks, then I'd continue on.

Gotta run--be back to revisit this later.

hths

mrsfru

ETA:

The same company that makes Neocate also makes EO28 Splash, which is a nutritional drink that can be used for older kids (much like a formula, it supplies all energy requirements, supposedly). It does NOT have corn syrup solids in it, unlike most all of their other products, but it DOES have artificial flavorings and acesulfame potassium (Asparatame--yuck!). One of reasons I was comfortable trying Similac's Alimentum w/my kids (I did nurse, but one had severe food intolerances and we briefly added Alimentum as a supplement) was b/c it's free of corn syrup solids and other corn products. I'm sure that there is another elemental formula out there, but I have a sneaking suspicion that it probably contains corn syrup as well!

ETA2:

There are several other "elemental" formulas out there...Enfamil makes one called Nutramigen AA (it's the elemental version of their original Nutramigen, which had corn syrup solids in it). They also make something else for kids w/GI issues--check the Enfamil website. Similac makes one as well--called Elecare (elecare.com)--it may be more likely to be corn syrup free, b/c it's special for kids w/diarrhea and other issues and b/c Alimentum that they make is corn syrup free. There's something else out there that can help, and there's probably a reason she keeps getting such bad diarrhea. In addition, no matter what, she needs probiotics and they can help, too. Culturelle now has a dairy free version for kids. GL!

[heatherdeg]

You know, we are a completely corn-free household because my bio-ds is intolerant. I never did like the fact that Neocate had corn solids in it and I knew about Alimentum, but she didn't tolerate it. Then again, Alimentum isn't broken down the way Neocate is. I didn't know Elecare DIDN'T have corn in it--but will check and I had no idea Nutramigen had a higher level of allergenic formula. Thanks for all that.

Her birthmother was from Guatemala and I have no idea what her birthfather was, but we strongly suspect he was also Hispanic. Oddly enough, our naturopath advised us that corn might be her best option as it would be a large part of mom's native diet. That being said, there is scuttlebutt that mom was in the States illegally for her pregnancy--and therefore may not have been eating her native diet.

Honestly, I'd love to put her on WAPF formula but I'm worried she'll react to the dairy.

What is MCT oil?

Thanks for all of this. I have such a good handle on my son's digestive intolerances that I feel like I'm starting all over again with her and I feel like such a fish out of water. I've already learned stuff that I can't believe I'd never heard of through his problems (both in your response and through a friend IRL)! Always learning...

(OMG... I think I just stumbled on my Sr. Title. FINALLY!)

[mrsfru]

Heather,

You're welcome. If it helps any, my second child is very different from our first, and they are both biologically mine and dh's! I feel like a fish out of water, too, at times...and we know they both got here via the same genes (the other jeans, too....LOL)

It helps sometimes to get a fresh look...earlier on w/ds2...I was using Burt's Bees baby lotion on him, and I couldn't figure out why he kept breaking out in a rash. For some reason, I had actually forgotten that it has dairy in (and ds2 was actually FTT for awhile due to *dairy*, egg, and soy intolerances!) It happens to all of us! LOL

As for the bm's native diet--it should work that way--it would make sense...but obviously, sometimes it doesn't. And if it's a problem digesting fructose, it's not actually the corn--corn's just delivering the fructose.

Maybe at this point, she wouldn't react to dairy at all. DS2 is 17 mos old, and although FTT at one point due to food intolerances, can now drink cow's milk occasionally and eat cheese. He can't tolerate large daily amounts, but he can in moderation and is okay. Some dairy reactive kids even react to Alimentum and Nutramigen (like you said, they aren't elemental--just hydrosylized), but you never know.

MCT oil--Medium Chain Trigliceride oil--that's a fatty blend they add to these specialty formulas and it's often given to those w/Crohn's disease or preemies to get fat and calories in them. I think it comes from coconut oil--those websites about the formula explain it somewhere, but you can look it up otherwise. It could be helpful right now if you can't find a formula that works and she isn't eating enough calories or is really underweight/not growing well.

I didn't know Nutramigen had that either, till I read it last night! We are fortunate that we have ped's GI's and other ped's specialists where we live, so some of this stuff I didn't have to look up for my regular ped--he just referred us and off we went.

Glad to help--send an update--would love to know if you guys figure out why she has such bad diarrhea. (As an aside--and something to pay attention to--b/c ds1 had diarrhea for so long and already has sensory issues, he really struggled to go to the bathroom when we finally got the actual diarrhea under control. Things went the other way and he got constipated, b/c he was so worried about going and how it would feel that he would try hold it -one of several reasons, it seems. It also seemed like he lost the ability to feel when he had to go or got flipped out when he felt it--it had been over a year of diarrhea and not having to use those muscles to go. When you finally get to the potty training, don't let anyone try to punish her or make a big deal of it all, b/c it's hard enough for these little ones when they are having bm problems.)

I've written a novel--sorry! Hope all this helps and good luck! Maybe someone else will have more insight and you'll get a solution! (-:

mrsfru

[heatherdeg]

I'm prone to writing novels, so don't sweat it. Plus, it's all helpful.

Ad is actually growing fine and doesn't appear at all bothered by the diarrhea. I live in central NJ where docs are aplenty, but most of them are clueless. With bs, we were BLESSED to stumble on an immunologist/allergist that had a clue at all. If my regular ped/dr. starts to believe we are out of the "illness" phase and starts investigating other things, we will visit that immunologist. At the moment, she is clearly still sick with what looks like a cold and yest. they thought she was just starting an ear infection... but voila--the diarrhea appeared again today.

Will keep you posted! Thanks!

[KimPM]

MCT can come from either coconut or palm.

Is it possible she's reacting to soy in the Neocate? If she's milk sensitive, there's also a good chance she's soy senitive as well.

[heatherdeg]

Originally Posted by KimPM

MCT can come from either coconut or palm.

Is it possible she's reacting to soy in the Neocate? If she's milk sensitive, there's also a good chance she's soy sensitive as well.

LMAO... *I* am usually the one telling people that.

The thing is: she's been on the Neocate for over a year. Not that it means anything, but it's just weird. Like I said, she had this problem initially, too.

I need to look into the other formulas and/or getting MCT oil from the doc to make my own.

[FuzzyOne]

have you looked at neocate's EO28 Splash? it does not contain corn.

[JSerene]

For what it's worth, my dd is has been on neocate junior and neocate 1+. They are both elemental formulas. The protien is twice broken down and should not trigger a reaction, even in those corn sensitive (my dd is severely sensitive to corn). Her normal reaction to this formula is watery green stools. Our GI team told us this is normal and common.

[heatherdeg]

Okay... so here's what I'm thinking today.

She had the same problem last year. Same time of year. Back then, it went on easily for a month. She happened to get a cold that lasted... hmmm... maybe 7-ish days? I think these things happened at the same time.

This year... same time of year (this is the part that baffles me) and this year she's been sick on and off for EASILY a month.

Someone suggested to me that maybe she doesn't have a problem with the formula at all, but when she gets sick--it just gets her "in the gut". I'm wondering now. And I have been horribly negligent on probiotics for her (literally none in the last 6 months or more) but I started them up again earlier this week.

I DID receive samples of Neocate One+ and Jr. but not Splash. I think it's time to increase her calories regardless.

[nurturebaby]

I know this thread is old, but for anyone researching this, I wanted to offer the information I've found as there's a lot of confusion about elemental formulas!!!

My dd was thought to have that serious condition a pp mentioned - HFI - Hereditary Fructose Intolerance - her doctors and dietitians did a lot of research to confirm that the elemental formulas did NOT contain fructose (at least Elecare does not - we didn't research Neocate the same way, but they both use the corn syrup solids as a carbohydrate source, so I would think it's the same).  The corn syrup solids, even though they sound very similar, are not made from high fructose corn syrup.  The sugar in the corn syrup solids, and thus the elemental formulas I believe is glucose - not fructose.  So these formulas are safe for HFI patients and are free of fructose.  The web sites even state that these formulas do not have fructose in them...

this is coming from the doctors at CHOP - one of the best children's hospitals around...

[beenmum]

 Jumping in late, but we used Resource Just for kids and Peptamen jr. Both worked well. There seems to be a few more alternatives on the market recently. Maybe you could try some different types?

[heatherdeg]

Well, old as this thread is, we are STILL on Neocate Jr.  She turned 2yo in early Nov.  Ped is totally not concerned about the fact that the majority of her calories comes from formula.  He said that in other countries and/or if I'd been bfing, nobody would think twice about this.  She's developmentally spot-on, physically developing beautifully and it's obviously not an oral issue that would hamper her oral development because she's speaking excellent for her age.  He didn't see the point in changing the formula--likely for the reasons listed above.

Go. friggin. figure.

We've tried seriously everything including putting her in daycare 5 days/week for 3 weeks to see if she picks up eating habits from other kids.  Well, that cut down the bottle intake during the day... which left her waking 3-4x/night (vs. her 1x/night usually) to take bottles and get her calories.

I've seriously just given in.  She'll eat when she's ready.

FWIW, we tried kefir with her--thinking that because it was fermented, the proteins would be broken down and maybe she'd tolerate it.  No such luck.  Kid LOVES, LOVES, LOVES kefir and it gives her wicked diarrhea.  That being said, it's store-bought stuff made with pasteurized milk (we relocated to IL in late July and I haven't figured out how to get raw milk as easily as in NJ nor as inexpensively >:(  ).

I type this as she's showing me my 6yo's Lego guy and telling me "Yego, mommy... yego".  :)

[girlzmommy00]

Originally Posted by heatherdeg 

Well, old as this thread is, we are STILL on Neocate Jr.  She turned 2yo in early Nov.  Ped is totally not concerned about the fact that the majority of her calories comes from formula.  He said that in other countries and/or if I'd been bfing, nobody would think twice about this.  She's developmentally spot-on, physically developing beautifully and it's obviously not an oral issue that would hamper her oral development because she's speaking excellent for her age.  He didn't see the point in changing the formula--likely for the reasons listed above.

Go. friggin. figure.

We've tried seriously everything including putting her in daycare 5 days/week for 3 weeks to see if she picks up eating habits from other kids.  Well, that cut down the bottle intake during the day... which left her waking 3-4x/night (vs. her 1x/night usually) to take bottles and get her calories.

I've seriously just given in.  She'll eat when she's ready.

FWIW, we tried kefir with her--thinking that because it was fermented, the proteins would be broken down and maybe she'd tolerate it.  No such luck.  Kid LOVES, LOVES, LOVES kefir and it gives her wicked diarrhea.  That being said, it's store-bought stuff made with pasteurized milk (we relocated to IL in late July and I haven't figured out how to get raw milk as easily as in NJ nor as inexpensively >:(  ).

I type this as she's showing me my 6yo's Lego guy and telling me "Yego, mommy... yego".  :)

Hi I'm in central NJ as well.  My little guy is 11 months old & we're about to move from infant Neocate to Neocate Jr.  He has severe food allergies & has reacted to every food we've tried.  So we're just sticking with Neocate.  He's very tall for his age, talking & walking so I'm not too concerned otherwise.  My middle dd had the same problem & was on Neocate only until she was 3 1/2 yrs old. 

Neocate sends out awesome & free sample packs.  They just sent us a can of Neocate jr & 6 boxes of Splash, 2 in each flavor.   He hated the Grape Splash, didn't really like the Tropical Splash & had an allergic reaction to the Orange-pineapple Splash.  I'm assuming the flavorings.  But he likes the plain Neocate infant so we're just going to stick with unflavored Neocate jr.  The Neocate company just stopped making Neocate 1+

Neocate also makes Duocal for those who can eat some food.  You sprinkle it on top to add calories.  Peptamen Jr is whey based so for milk allergies, it's not a good choice but I know someone whose child is tube fed & that's what they eat.   

[anj_rn]

Sine your child already eats table food, have you considered blending real food and giving it through the tube.  That is what we do.  DD's base is still breast milk, but there are many who use hemp, soy, coconut, almond, or rice milk.  I have found it really can help you figure out food intolerances, since you know what you add.  I blend fruits, dairy, veggies, meats, quinoa, and it has worked well for us.  I like being able to alter her diet based on weather, illness, etc.  I also like knowing that I am feeding her like I feed my DS.

[nurturebaby]

Originally Posted by anj_rn 

Sine your child already eats table food, have you considered blending real food and giving it through the tube.  That is what we do.  DD's base is still breast milk, but there are many who use hemp, soy, coconut, almond, or rice milk.  I have found it really can help you figure out food intolerances, since you know what you add.  I blend fruits, dairy, veggies, meats, quinoa, and it has worked well for us.  I like being able to alter her diet based on weather, illness, etc.  I also like knowing that I am feeding her like I feed my DS.

I've wondered about giving real food purees through the ng tube - is it an ng or g tube your lo has?  Mine was on an ng tube, but we're trying without for now to see if she can maintain at least a small weight gain.  She was having some real issues with the Elecare through the ng tube - would vomit it all up.  She eats a little food now and is breastfeeding, but it would be nice to know the option exists to give real food through the ng tube.  I always thought things like meats through there would get gross since you can't clean/sterilize it.

[anj_rn]

Originally Posted by nurturebaby 

Originally Posted by anj_rn 

Sine your child already eats table food, have you considered blending real food and giving it through the tube.  That is what we do.  DD's base is still breast milk, but there are many who use hemp, soy, coconut, almond, or rice milk.  I have found it really can help you figure out food intolerances, since you know what you add.  I blend fruits, dairy, veggies, meats, quinoa, and it has worked well for us.  I like being able to alter her diet based on weather, illness, etc.  I also like knowing that I am feeding her like I feed my DS.

I've wondered about giving real food purees through the ng tube - is it an ng or g tube your lo has?  Mine was on an ng tube, but we're trying without for now to see if she can maintain at least a small weight gain.  She was having some real issues with the Elecare through the ng tube - would vomit it all up.  She eats a little food now and is breastfeeding, but it would be nice to know the option exists to give real food through the ng tube.  I always thought things like meats through there would get gross since you can't clean/sterilize it.

 We have a g-tube (technically a 12 fr Mickey button).  I started by just adding pureed veggies to my breastmilk.  I did the traditional 1 new food for 3 days thing to make sure DD would tolerate it (I have several food allergies).  At first I used stage 1 organic babyfoods (you can use stage 2s as well).  Now I do my own.  I do still have some stage 2s for emergencies or travel (since you do not have to heat it.  The plan is to start a slow transition from EBM to milk after DD turns 2.  I have not had any problem with my tubes getting yucky (and to be honest, they can get yucky with formula too).  I would assume that your childs NG tube is smaller in diameter (less than 12 fr), you blend would need to be smoother.  It is not hard to doo especially when you can cut the blend with EBM.  I will warn you that 4 days of carrots turns poop bright orange, not dangerous, just a little shocking.