Neocate Horror — HELP!

[Anonymous]

Okay, we switched Simon to Neocate nearly 2 weeks ago. He went from sleeping a few hours at a time, at night, to not sleeping at all. He is MISERABLE. At first I thought he was constipated, but now I don’t even think it’s that. He’s got bad tummy aches but I’m not noticing a huge increase in gas — although I think that’s the problem.

I don’t know where to go from here. Should we keep him on it? Should we try (yet again) something else? I really thought Neocate was the cure-all. We ordered two cases of the stuff, thinking now he’d finally be okay. And he’s worse than ever. I just want to cry and cry. My poor baby.

Has anyone else heard of a kid doing so poorly on the stuff? How much longer should we stick it out? With the other formulas, he had reflux, he had gas, he had eczema, but at least he was sleeping, if only a little. This has been awful.

[Anonymous]

I am so sorry to hear you’re having such trouble 🙁 and that Simon is still not feeling well.

I’m thinking a couple of things here, Neocate definitely can decrease the number of bowel movements your LO will have because it is a low residue formula, and the transition may be causing some extra gas. Have you tried anything for gas? Mylicon drops? Warm baths?

Also, you said it’s been nearly two weeks, we usually recommend waiting the full two weeks because that is the average time it takes to see improvement, however every baby is different and some see improve right away and others take longer, especially if there is any symptoms of GI transit problems.

If you really feel like Neocate is not working for your LO, you may want to consult with your doctor and think about trying another elemental formula, like EleCare. They are the same type of formula (elemental) however sometimes babies do better on one versus the other without explanation.

Good luck, and I hope Simon starts feeling better soon.

[Anonymous]

Hi, Rachel,

Thanks for the response. He’s been on it for 2 weeks, now. Still no real change — except the reflux has actually gotten worse, even on Zegerid. The stomach pain is the worst; I can actually hear the gas moving through his little body. We got 2 cases of the stuff so we’re trying to give it another 2 weeks at least. We’ve tried warmth on his tummy, as well as Mylicon, with no real change. I’m hoping things just suddenly “click,” though. Still trying to remain positive.

[Anonymous]

Hi Maggi!

I just opened your PM. I will message you in a bit. Hang in there!

[Anonymous]

Angie, thank you so much for responding — I will write you back, soon. It’s been a crazy week.

Well, Simon’s no better, really. I can’t make out any acid reflux screams like before, but we take extra care not to lay him flat, anywhere. But he is sleeping as terrible as ever. Grunting and wiggling, all night long. He’s no longer constipated; he’ll pass a few small stools daily. But they’ve started to look very mucus-y. There is also some yellow stool, sometimes, with the dark dark green. Any idea what’s going on?

[Anonymous]

Hey Maggi –

No worries at all about replying – I understand – ALL of your energies are going to your baby right now.

What was he on before neocate? Dairy? I remember with Callie it just took that long to ‘clean out’ and ‘heal’ her insides.

I would start Simon on a probiotic right away if you haven’t yet. It is SOO hard to wait for things to take over – that’s an understatement. I remember thinking – if this doesn’t work – what in the world will? We just had to be super patient.

The probiotic will help heal his insides as well. We use this one:

http://www.rockwellnutrition.com/Ther-Biotic-Infant-Formula-by-Klaire-Labs.html

That should definitely help with the mucus too.

Callie had the dark green poo as well and that became more normal after a month or more?

I just looked at your signature – here I am explaining things – and perhaps you already know a lot of this as you have a toddler!

Anyway – I just told my husband about you – we’ll say another prayer! The dark days of the winter with Callie still are fresh in our minds – she’s now a wild healthy 10 month old that got through her terrible colic and tummy pain….

[hellbennt]

probiotics, brands used:

https://www.infantreflux.org/forum/forum_posts.asp?TID=8970&PN=1

[Anonymous]

We tried Neocate as well and it seemed to make baby worse with the reflux. It seemed to be to thin so we thickened it, but it upset his stomach. I have read that with reflux it doesn’t matter what formula you use because it is a gravity issue, unless baby has dairy/lactose/soy allergies, then the formula matters. My baby has both reflux and cannot tolerate any formula so I put him on goats milk off Dr. Sears website.

[Anonymous]

How does he do on the goat’s milk? I have a can of the condensed but it hasn’t come to that (yet). I was worried about using it because it’s so much higher in protein than cow’s milk, formula, or breastmilk, and didn’t want to screw with his kidneys at all.

Well, the Neocate did wonders for Simon’s reflux, after some weeks on it. But it caused him to have severe stomach pain and gas that didn’t look like it’d ever go away. I let my husband convince me to try soy, and after a gradual transition, it actually seems to be working. His sleep still isn’t fantastic but it’s getting SO much better. His stool on Neocate became VERY watery and mucousy (sign of colitis according to the pediatric g.i.) but on soy is pasty and “normal.” No tummy pain. The g.i. still wants to try him on a motility drug — but I vetoed Reglan, so we’ll try Erythromycin (and supplement with some probiotics) for a few days to see if it makes a difference. He won’t up the Prevacid dose until we try a motility drug, first. He’s got us on 7.5mg of Prevacid, 2x’s a day.

Thickening the bottles and eating anything but Neocate seemed to aggrivate his reflux, which is why the doc thinks it’s a gastric emptying issue (he had pyloric stenosis when he was 3 weeks old and had surgery — I wonder if it didn’t completely fix things? Although he isn’t throwing up anymore, and only spits up little bits, but he does hours after he’s eaten…)itsmemaggi2011-09-01 14:46:52

[Anonymous]

Sorry for the late reply, the goats milk has been a lifesaver for us!! I did read it is higher in protein, that is why it is diluted quite a bit… I use the Meyenberg canned milk you can purchase at Wal-Mart, Super Target, and on Dr. Sears website, he has the the formula. 24oz water to 12oz can.

For his 2 month checkup, we told the pediatrician we had him on goat’s milk, and he had no problem with it at all. He said we would have to supplement with a liquid vitamin at 6 months.

We have him still on Prevacid and I do one dose at night of 15mg. The Neocate did not work at all for us, it seemed worse even if we thickened it because he has allergies to all formulas. So your baby may have allergies and reflux together which is a constant battle.

He still has reflux, but it has almost disappeared on goats milk. I researched every formula and goats milk and made the decision to go with goats milk due to all the stuff added to formula. In my opinion, the less stuff added the better for a baby to tolerate. All the chemicals added to formulas it could be any number of things that cause allergies to baby’s stomach..

I hope this info helps, let me know how he is doing, good luck!!

[Anonymous]

My 3 month old little girl was started on neocate a week ago and has been in so much pain and discomfort. I’m not sure if it’s the formula or if the formula is making her reflux worse. Honestly, I’m not even sure why she was put on neocate besides the Dr thought it would help her reflux. I’m not sure what to do at this point, but she is waking up screaming unconsolably every night at 1am. We are currently giving her 15mg prevacid solutab in the morning and before bed. Does anyone have any suggestions??

[Anonymous]

Hi there –

I have a 16 month old and was right were you were when she was about 4 months old. My stomach hurts hearing your post – I am SO sorry you are going through this. I feel a calling, now, to help other moms going through feeding troubles!

My DD took about a month to get used to neocate. It was the hardest for the first three weeks – she was also in a lot of pain. Is your baby spitting up, still? How long has she been on prevacid?

I hope we can all help and encourage you somehow. Does she have colic?

[Anonymous]

Forgot to add – no feeding/reflux troubles now except for food allergies…but she’s mostly a happy eater now. That said…you’ll get beyond this, mama!

[Anonymous]

How did you know your daughter needed neocate? So you stuck with the neocate? How long before she wasnt in pain? She has been on prevacid since 3 weeks old. Her reflux seems worse on the neocate. She did have colic but has gotten past that. My LO doesnt have bloody stools or anything like that. Just some eczema, reflux and what I think is the red ring on her bottom but I’m not sure what that is supposed to look like. Does she even need neocate?

[Anonymous]

We tried nearly 10 formulas before neocate. Even nutramigen caused rashes. Our daughter’s reflux also got worse when she first went on neocate – it was awful – more like vomiting. I remember being SO afraid one morning b/c it was just everywhere.

She didn’t have blood in her stools, either. Just major tummy trouble and rashes on EVERYTHING else – it was so horrible. What did you try before neocate? I couldn’t breastfeed due to a reduction I had years and years ago – it was heartbreaking and I wouldn’t have done it had I known we would have gone through all of this w/ our little baby.

We stuck with neocate b/c there was just nothing else at that point and I kept reading where sometimes it takes a good while to heal their intestines. Do you like and trust your pedi?

We were on prevacid as well and she didn’t have to be on it anymore after about 6 weeks on neocate. Is your baby on probiotics? Go for a dairy free high quality one – it takes a couple of weeks – but that REALLY helped our daughter’s stools and tummy troubles as well.

[Author]

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