problem with Neocate?

[Anonymous]

I’m really worried about my little girl. We got the Neocate yesterday and I switched immediately. She has spit up almost every feed – not just a little reflux, but over 2-3 hours until I can’t imagine there is anything else left in her. Then she’s hungry and crying again and it starts over. Not only am I concerned she’s not getting the calories she needs, but I’m also concerned about her getting dehydrated. She’s only ok when she sleeps, but I think she’s had about 2 hours in the last day. Has anyone had this – vomiting up almost all the Neocate with a switch? What did you do? Any recommendations – I’m really scared for her!!

[Anonymous]

Do you have a nurse on call line? If I remember correctly she’s pretty young?? If it were me, I would try to get somewhere tomorrow with your doc, mine is open on the weekends otherwise ER if you are really not getting anywhere and you think she’s getting dehydrated. My son didn’t have those kind of troubles with neocate, but we did with alimentum. I would be concerned also, but it’s not necessarily the formula, one day is not enough time. It took 2 months and a feeding tube for my son.

[hellbennt]

I would go back to the old formula and and add an ounce of the neocate to it & slooowly switch from the old formula to the new…

[Anonymous]

Agree totally with Laura, the switch needs to be made really slowly, adding in an oz or 2 of neocate to the old formula until she is used to it. Also, nobody told me at the time, but Neocate is REALLY thin so it has NO weight to it in the stomach and is spit up a LOT easier until they are used to it and things get more under control. It is actually helping them but appears to be worse at first until the GI repair is done. Again, I thought things were worse at first too! Although I’d still get her checked out for the dehydration!!

HTH!!

[Anonymous]

Thanks for the advice! I called the RN hotline and she said I should call the doc. We had a long talk last night and the babies and I went in today.

She’s not sure whether the sudden change is irritating the belly, it’s (Neocate) too thin, or there is a problem with the babies with Neocate. However, after thickening with some rice cereal Danielle did mostly keep down two feedings (only one bout of projectile vomiting), so she wants us to keep doing that. Of course, you ladies know so much and would have mixed the two formulas, so now I’m torn. My husband fed her this morning, didn’t thicken, and everything came up. 30 minutes later was time for Zegerid, so I gave it to her. She refluxed that 1 hour later!!

The doc was also concerned about the fact Danielle and Joshua still have so much in their tummies three hours after a feed, so prescribed Reglan. I’m nervous about the side effects, but hope we can get off it in a couple weeks once the Neocate really kicks in and begins healing everything. I’m still blaming all the health problems on the MSPI.

So…
1) Thank you so much for your advice – it’s always really great!
2) Any thoughts/ideas/reactions to what happened with the doc?

Thank you, thank you, thank you!!!

[hellbennt]

I would try reglan if you think it’s delayed gastric emptying, DGE, as that’s what reglan is for. there is an actual test for DGE called a milk scan (has another name too). I would try the reglan and look for neurological side effects- they can be stopped by benedryl. if you see the side effects and also decide (perhaps via testing) that there is DGE, there are other medications…

as for thickening: some swear by it and others think that grains/cereals/solids are not good for babies’ bellies (especially reflux babies) until they are at least 6 months old…

[Anonymous]

I’m glad Danielle is doing a little bit better. It took some time for us to make the switch and see the benefits of Neocate, but it was absolutely necessary for us to be on neocate for us to have the happy baby we have today. The MSPI was a huge part of the reflux issues (for us) and at first, it is so confusing b/c it looks like things are worse with the switch. We were on RTF Alimentum which is kind of thick and when we went to Neocate Landen would vomit all over the place and I was like “WHAT?!?!?!” only to learn that his poor stomach was used to having something thicker in it. We tried rice cereal for 2 days. Day 1 it seemed to help, day 2 was a nightmare for us. His stomach just couldn’t digest the grains. Some moms say it does wonders for their babies to thicken with cereal, so it may help your twins.

You can also try “simply thick” or “thick it” available online. Some have sworn by that.

Good luck!

jilly782007-10-13 20:21:07

[Anonymous]

Thank you so much for the feedback!! It’s good to hear that the Reglan’s side effects can be counteracted – I was so worried about them! And, I already told the doc I don’t want Danielle on that in the long term because I’m concerned. I’m hoping that their stomach’s are so slow to empty because of the MSPI, the Zantac, and/or the Zegerid which I plan to have dealt with by giving the Neocate. I know, that’s probably unrealistic, but I have hope!

Jill, would you be willing to tell me what happened to Landen on the second day? I want to keep an eye out on Danielle to make sure she doesn’t have a problem if she isn’t digesting.

It doesn’t seem like cereal would be the best option for such a young baby – so I’d like to wean Danielle off of it when the Neocate kicks in. How did you know when that happened? Any suggestions on the weaning – I don’t want another round of vomiting everything that Danielle has taken in? The Alimentum she was on was powdered, so thicker than RTF – and it was even thicker because it was more concentrated to bulk up to 22 calories for Danielle.

Lisa with twins2007-10-13 21:43:18

[Anonymous]

Hi Lisa,

The 2nd day he was just really gassy (cramps) pulling his legs up and crying all day. I guess his poor stomach just couldn’t break down and digest all of that rice! THe first day it ‘seemed’ to help b/c it held down the liquid but it really reared it’s ugly head the next day. He was just waay too young. He was around 2 mos of age when we switched to neocate BTW.

I am willing to bet that the reason she is spitting so much now is the weight of the neocate vs the alimentum. It “should” resolve once her system is used to it. It did for landen. And once the neocate fixed the GI upset, his reflux improved dramatically and there was just no need (for us) to thicken.

Good luck!

[Anonymous]

Just to give you another opinion. Colton was switched without mixing in his other formula but he didn’t do so good with it. We began mixing in cereal and he loved it. We continued that until he was a year old. Also I agree with Laura you might ask about some of the other meds to treat DGE. I am sorry to hear you are dealing with two babies at once. I can’t even imagine me doing it. Also it seemed like most people had better luck with simply thick than thick it. Thick it has modified corn starch and most babies get the runs from it.

[Anonymous]

We tried thickening Carter’s formula when he was 6 months old because the reflux was really bad, and his tummy just couldn’t handle the cereal. So, we just didn’t thicken it. Eventually, he ended up with an aspiration problem. So, we HAD to thicken it. At that point, our GI dr told us to use “Simply Thick”, which is nothing more than a thickening agent. It has no calories and no ingredients that would hurt the tummy. It’s just a clear gel. If I were you, I would for sure try that. You can buy it on ebay much cheaper than on the SimplyThick website. Carter is now 13 months and still on the Simply Thick. His reflux has improved a lot though.

Also, when we went to neocate, Carter’s reflux worsened, maybe because it was a little thinner than what he was used to. So, we went back to nutramigen. We had him intolerance tested, and he showed negative for Milk and Soy protein intolerance. We did find out he had an egg allergy, which really flared up his reflux. Now that he is off the eggs, he is MUCH better.

Hope this info helped!

[hellbennt]

yes if you’re worried about aspiration there is a swallow study that looks to see how the baby swallows

oftentimes after a swallow study the parents learn that the formula needs to be thickened & to what exact consistancy- in those cases usually simply thick is used

[Anonymous]

Hi ladies,

Thank you so much for all the information, support and advice! We had a minor miracle and got Danielle in to see a pediatric GI today with a canceled appointment (the next available appointment was in January, for which we booked Joshua).

They agreed that she needs to be on Neocate, especially as her atopic dermatitis has already drastically improved, even without treatment. They also think the diarrhea is due to her MSPI and will improve with Neocate. They noted that the GERD was either due to prematurity, MSPI or a combo of both. The doc was unhappy with the dose of Zegerid and was unwilling to take over that prescription – when I mentioned the MARCI-kids website she rolled her eyes and said that they overdosed children. I explained how much this has helped Danielle and so they said to continue that with my regular pediatrician. At some point, I’m going to have to have a fight with someone, because my regular pediatrician said she’d only approve the dose for 2 weeks.

Anyway, the doc understood my concerns about Reglan and put Danielle on erythromycin for dge. She said we’d be able to tell with an upper GI. Doc was concerned about ruling out pyloric stenosis, so we had an upper GI today. We watched and the doctor there said that Danielle refluxed really quickly, a lot of food, and it went all the way up her esophagus – so he thought it was pretty severe. Interestingly, she didn’t even seem to be feeling it like she normally does when I notice her silent reflux. So, I’m now thinking she’s refluxing even more than I’m aware of. He said her stomach contents seemed to empty at a normal pace, but we should maybe get a nuclear study to test for delayed gastric emptying.

Doctor said we should continue thickening with rice cereal. She said simply thick was for babies with much worse problems, aspirating, trouble swallowing, etc. However, we apparently had her on the wrong rice cereal – we had her on Gerber. The doc said that this has milk!! So, she recommended Beech Nut. No wonder her atopic dermatitis started worsening again – duh!!

I was going to ask the doc for that dge study. But, I thought about it now and don’t see the point. Danielle’s been put on e-mycin, so I don’t think the treatment would be any different and the dge won’t always show up every time, from what I’ve read. So, I’ve decided to drop that.

If you made it this far, thank you so much for everything!! Hopefully this will start getting better soon. Any other advice or suggestions you have are always much appreciated. I couldn’t advocate for my babies half as well without you ladies!!!

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