Problems starting on neocate

[Anonymous]

My son is 11 1/2 months old, and severe FTT. He has some other health issues that took precedence, and so all of a sudden a few weeks ago we found ourselves at the ped GI for the 3rd or 4th time and suddenly he was suggestion a fundoplication and tube feeds.

We had been suspecting he wasn’t digesting food well, and on that the GI told us to try Neocate (he was already on Alimentum) though he didn’t think it would work. So we got some, and we’ve been weaning him onto it over the past week.

Well, his stools are better, though he’s sort of constipated. He’s gaining weight REALLY well. And the bacterial diaper rash he’s had for 2 months is magically gone. BUT …

As we passed from the 1/2 neocate 1/2 alimentum blend towards the 2/3 neocate 1/3 alimentum, he started having VIOLENT bouts of reflux, which he’s never had before. Choking on it, and in his panic unable to roll over before he vomits, and yesterday he nearly aspirated – I got there just in time.

In addition (or possibly as a partial cause) he CANNOT seem to burp. I’ve added mylicon and that helps some, but he just gets all this trapped air and gets really uncomfortable and screamy, and stops eating after only a couple oz. (Very unlike him.)

I know I need to give him time to adjust to the neocate, but I don’t see how I can get him fully ONTO it if he’s going to so violently reflux and possibly aspirate it, and if he can’t burp and stops eating so soon. Has anyone had similar experiences, or can offer any advice? I’d really like him to be taking this because I THINK it’s the ticket to avoiding tube feeds.

Thanks!

[Anonymous]

can you thicken with thickit?

[Anonymous]

One thing to keep in mind is that the neocate is very thin and many babies have a hard time with it in the beginnning b/c of how thin it is. I hope some neocate moms will chime in as we didn’t use it, but I rememeber reading many posts regarding it being really thin in comparison to other formulas. HTH.

[hellbennt]

suddenly he was suggestion a fundoplication and tube feeds.

has he had an endoscopy? ph probe?

[Anonymous]

I a m sorry to hear your baby is struggling, my heart goes out to you.

before you agree to a fundo surgery, DO EVRYHTING YOU CAN to try to control the reflux without it. Is he on a PPI?

My dd was on the verge of a fundo due to so much vomiting. We ended up with an NG tube for a while. It was God sent. Her weight went up and the stress for her and the whole family was reduced to 30%. I also started her on plant based digestive enzymes, Neocate, high doses of probiotics and went through a whole year of elmination diet.

My DD also had very delayed gastric emptying. She improved within 4 months with these new changes (vomiting wise). I coun’d belive that food allergies/ senistivities could make someone so sick.

So i would keep up teh Neocate and maybe agree to an Ng tube until you can get his weigh up. An endoscopy and impedance test (similar to Ph porbe) will be what i push for next.

hugs,

Leo

[Anonymous]

Thank you everyone!

He has not had an endoscopy nor a ph probe. He has had NOTHING by way of GI tests. I know. It’s crazy.

Basically, by the time we were referred to a ped GI, we were also at the point of scheduling his brain surgery, so we opted to hold off on GI tests. And then 6 weeks after surgery, as we approach his 1st birthday, they’re panicking because he’s falling further and further off the curve.

I personally suspect he has some amount of delayed gastric emptying – too often I’m getting coated in partially digested formula vomit. I don’t think reflux has ever been his MAJOR problem in gaining weight. He violently reacts to medication – he vomits at just the smell. And when we have gotten it into him, he’s not eaten as well after, like his stomach is upset. It’s only really think liquids that he refluxes to the point of it bothering him – pedialyte was the ONLY thing up until the neocate. (Buying some Thick-It today – thanks for the tip!)

We’re still toying with a feeding tube – we’d go straight for the g-tube because he’s going in for surgery anyways (hernias), and he has such a nasty gag reflex I think an ng-tube would be a diaster and cause more feeding aversions. But where I think a lot of the problem is that he’s just not digesting his food appropriately, the tube isn’t going to help much.

So far we’ve been told he *needs* an Upper GI – though no one can tell us why the risks of radiation (he’s had a *lot*), the ng-tube to get the barium into him (he really won’t drink it, I KNOW THIS, not that they believe me), and the potential worsening of his hernias is worth the information they might get. The current GI thinks an endoscopy is worthless, the other GI thinks they can do it during surgery just for kicks. Meanwhile I’m getting upset that no one is listening to what is actually happening during feeds.

He’s gained so well on the Neocate already (nearly 4 oz in a week, and he’s only half on Neocate), that I’m hoping this is really it. So we’ll thicken it, and we’re putting karo in for constipation, and keeping hoping to avoid the feeding tube!

Thanks for all the suggestions – if anyone else has any, keep ’em coming!

[hellbennt]

impedance test/probe! that’s it! also, I’ve read about the ‘bravo’ ph probe? not sure…

anyway, the Upper GI is to rule out structural abnormalities- it is NOT a test to determine reflux, bcse if baby isn’t refluxing at the actual time of the test then the test won’t show reflux…

an endoscopy will show what’s going on in there! it will show redness, irritation, inflamation, etc. Also, when they do an endoscopy they take biopsies and test for eos cells- the presence of them indicates allergies/intolerances…another thing to keep in mind is esophogeal thrush. I’m not sure if that shows up in a biopsy- I mean it WILL show up in a biopsy, but I think that I read on here that there still might be thrush even if it doesn’t show up from a biopsy bcse thrush is in ‘patches’ and they then would have to biopsy an exact ‘thrush patch’

someone please chime in !

here’s the link re: probiotics and from there, there’s a link re; enzymes;

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

[Anonymous]

you can see esophageal thrush with the naked eye—-i’ve got to find that picture of kassie’s scope and get it posted. however, the doc couldn’t tell if it was thrush or food allergies without the microscopic testing.

why is your doc suggesting a fundo without doing any testing???? sylvia had a fundo just before she turned 10 months old, but she had had 2 upper gi’s one to test for motility, because if there are motility problems it makes a difference on the kind of wrap that they do. she also had an endoscopy that showed that her esophagus was becoming unlcerated, and a ph probe that showed she was refluxing almost 25% of the time. she was also anemic and failure to thrive. she didn’t hit 20 lbs until she was almost 2 years old.

sylvia had a hiatal hernia, but it did not show with any of her tests. they discovered it when they went in to do her fundo.

[Anonymous]

We’re already using probiotics, but I none of the GIs have said anything about other enzymes though I’ve ASKED. (And these are major, world-reknowned hospitals we’re talking here.) So I’ll be looking into those!

From what I can understand they’re pushing for the upper GI to make the g-tube placement safer, and figure they’ll scope him while they’re putting the g-tube in. Please note that we haven’t agreed to a g-tube! The fundo is because they keep *insisting* he has severe reflux, even though it has NEVER bothered him except on the really thin liquids, and the frequent vomiting, even though I keep insisting he’s throwing up mostly because of having too much formula in his belly from a previous feeding. And really, because he *needs* to have his inguinal hernias repaired, they’re of the mind to “blue plate special” him and get lots of stuff done while he’s under.

It’s just a mess. I’m glad I found this forum. It makes me feel less like I’m the crazy one and more like the doctors need to listen. They’re just really freaked out because he’s not yet 13 lbs at nearly a year old. (He started off at a little more than 4 lbs – preemie twin.)

[Anonymous]

Oh my goodness, I am just reading this thread and bless your heart and all you’ve been through!

My DS2 had a real bad go with reflux and still has nasty food intolerances today. It would probably be easier for me to list the things he CAN eat at this point. Neocate with his saving grace and when we first transitioned him we had the same problem. Actually, as memory serves me, we did Elecare first and our pedi told us to give it straight up (no slow transition) and he violently vomited it eveywhere. I took him off of Elecare b/c I thought it was the formula. I learned here (wonderful site isn’t it) about transitioning slow and that the elemental formulas are soooo thin, naturally, they WILL throw them up at first until they fully adjust and until damage to their GI is healed!! Trust me here.

It must have been a month- maybe longer before I noticed a new baby on Neocate but it was worth the wait.

We also see lots of good things with use of digestive enzymes. We use Kids Digest, which is supposed to go in juice (I put it in applesauce). Actually, you might check out our digestive enzymes link and go with a diff’t kind, bc I’ve heard a few ppl say their kids do not like the way Kids Digest fizzes up….my kids like it! lol

Lastly, I agree with the others that testing will give answers, and I hope that you can get maybe an impedence probe and an Endoscopy done to see what might be going on in there. There could be many things (fixable things) that can be done before going to a tube, but I can also just imagine how scary it is to have him losing weight right before your eyes like that. 🙁

Bless you! Keep us posted!

[Anonymous]

they really can’t tell you how severe his reflux is unless he has a scope with biopsies. i was told that i have severe reflux esophagitits—-but i didn’t think my symptoms were bad enough to call it severe, so i asked my kids’ gi how they decide if it is severe. he said it has to do with cellular changes.

if your son’s problems are being caused by a food intolerance a fundo isn’t going to do him alot of good—-i would think it could possibley even cause him more problems, especially if he has motility issues.

i think i’d back up to the 1/2 neocate 1/2 alimentum for a while since he was doing so well on that and gaining weight well that way.

a scope is definitely not worthless—there is no other way that they can tell the condition of his esophagus. if it is not red and irritated, than the reflux is not doing any damage. if they take biopsies, like they should, they would be able to find eosinophil cells which would tell whether or not he has some food allergies. if they really do the scope right, they would also take biopsies of the duodenum and check for celiac since you say he does not seem to be digesting his food well.

don’t let them do any surgery on him until they have done testing!

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