Anyone else has bad reaction on neocate?

[Anonymous]

We started Connor on Neocate last night and he screamed for hours after he had it. Since then, he has been more miserable than I have ever seen him – screaming in intense pain every time he’s awake. He only calmed down a bit when I would hold him – and normally he’s not a super happy baby but has at least a few moments where he’s not screaming. He’s been waking from his naps screaming too, which is new.

His pediatrician told me to go back to the nutramigen, and is referring us to a ped gi, but I was wondering if anyone had heard of this before? It’s awful, and I’ve been sitting here crying along with him all day.

[Anonymous]

he is 6 weeks now? Is he spitting or vomiting? We did notice a turn for the worse when we first started neocate, but what you are describing sounds worse than what we have been through…

I am so sorry you are going through this again!!!!!! Just curious how much Connor is keeping down…

[Anonymous]

Yeah he’ll be 6 weeks tomorrow. He’s spitting, badly, and is constantly clearing his throat. He keeps some down, but I can hear it coming back up all the time, whether he’s awake or asleep. During this latest nap he has woken up screaming 3 times, and keeps clearing his throat.

I really think he needs a PPI or something more for his reflux but his ped is uncomfortable with prescribing anything other than zantac. He’s referring us to a Ped GI but I am waiting to hear when they’re going to get us in there. I don’t even know if he really needs to be on neocate – I think that if he had a better medication for the reflux he’d be doing better. At least right now it seems that is really what is getting to him.

I just feel like I’m at a loss and don’t know what else to do to help him – and he’s SO MUCH WORSE than Owen was. I thought I had it bad with him – that was nothing compared to the non-stop screaming!!

[Anonymous]

I guess, the first thing that came to mind (keep in mind I can over think A LOT) but was pyloric stenosis. It is right around the right time. Do you think he is keeping some formula down, gaining weight, or pretty much loosing a lot of what he is taking in?

We had the non stop screaming thing with Dylan and it was horrible! Carter was not as bad….. It can be SOOO tough……

Just curious how much he is keeping down, some, all, pretty much none….

[Anonymous]

I don’t know much about Neocate at all, but I do remember reading several mom’s posts about how their child would vomit MORE when first starting Neocate because it is so much thinner than the other formulas. After, they adjusted though, it got better.

If this is the case, my guess is that your little one really needed a PPI before the Neocate introduction, and now that the thin formula is making him vomit even more, the acid is hurting worse.

Does that make sense?

[Anonymous]

That does make sense and I think you might be totally right about that. He is keeping down most of what he takes in, I think, Ann Marie – although there is a whole lot coming up that’s going back down. He’s more of a silent reflux kid – I hear the little glurp of it coming up and being reswallowed – but he does spit more than Owen did, for sure.

I think we’ll continue on the nutramigen until we get into the GI doc. At least with that formula it was manageable – probably because he was keeping more of it down. The screaming was just terrible! His pediatrician is great, but he’s convinced this is all just a formula intolerance and thinks that with the dose of zantac that he’s on he shouldn’t have reflux pain. He is on a very generous dose for his weight (so much that the pharmacist questioned it and almost wouldn’t fill it for me) but I think it’s just a case of the zantac not working so well anymore.

Hopefully once we get into the GI doc we can get this figured out. He had a much better feeding at 1:30 when we stopped the neocate – still uncomfortable, but nowhere near where he was earlier today.

Any other ideas I would love to hear! And yup, can’t say I’m happy to go through this again but at least I know it ends, right???

[Anonymous]

If he is keeping that much down, then i am def wrong…. Ugh! does the mylanta help at all for now until you get to the gi?

[Anonymous]

I think your plan sounds right on – hopefully you can get into Ped GI sooner than later. I agree w/ Ann Marie – try Mylanta!

[hellbennt]

Jonah was a non stop shrieker/howler, agh, I feel for you…

Babywearing is what saved me (& dh’s!) sanity…well, of course getting the MEDS right was what saved all of us, but in the meantime…

[Anonymous]

Yeah the mylanta definitely gives him some relief – actually he smiled at me for the first time a few days ago right after I gave it to him! I told my husband that at least we have all these tricks in our back pockets, left over from what we learned with Owen.

He is gaining weight well too – gained 3 lbs in the first month! So at least we’ve got that going for us.

Thanks so much for all of your thoughts – I’ll keep you posted!
Laura

[Anonymous]

I am really sorry to hear about this. I actually came back to “check” on you to see how Connor did. I replied to you last night! I am willing to bed he is refluxing hard b/c it’s so thin. Poor baby! We took an initial turn for the worse until the MSPI was under control, but that sounds really bad! Maybe for now, go back to the Nutramigen and max him on the zantac/mylanta until you can get to the GI dr and hopefully get a PPI. I always say that Neocate can be a leap of faith in the beginning b/c for most really bad refluxers it tends to look like they are doing very bad on it initially and then things get better.

Keep us posted!!! Hugs hugs…you have my sympathy. I’ve been in your shoes!

[Anonymous]

Thanks Jill – I do think that it was totally he was refluxing because it was so thin. I heard it coming up and back down SO many times it was crazy. He’s having a great day today so I don’t know if it’s because we’re back on the nutramigen or if it was a delayed reaction to the neocate or what.

Good news is that I heard from my doctor’s referral coordinator and they’re going to get us in to a Ped GI next Thursday. She’s going to call me back with a time and more info but I’m really happy that they’re going to get us in there so quickly. I feel like I can make it for a week – she said that where we took Owen isn’t taking patients until February. That’s crazy!

[Anonymous]

I just got some great news – heard back from the doctor and they actually got us in to one of the Ped GI docs at Children’s Hospital on Monday! I’m so relieved – that’s where we went for Owen and they were so great. I guess there was a cancellation so they got us that appt. What a relief!

[Anonymous]

YAY for a Monday appt with a GI dr. you know is good! I am so happy for you! Hope things are good this weekend and you get some good answers one Monday. Keep us posted!

[Anonymous]

AWESOME! good luck and update us!

here’s to a mellow weekend until you get there!

[Author]

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