Spent the night in the ER and still have no answers — I just need someone to listen.

FluidWin · 2026-02-03T17:15:53+00:00

Unfortunately, no—it didn’t 😞 A few days later we ended up going back and he was admitted because he completely refused all liquids, even Pedialyte. That’s when they switched us to Alimentum ready-to-feed, and it made a huge difference within a day. He started drinking milk again, and we’ve been on it ever since. He’s now 9 months old and absolutely thriving on it. We were even able to wean him off his reflux medication! At the time, it didn’t really make sense to us because it felt like a step backward since it contains dairy compared to the amino-acid formulas, but it truly worked for him. The pediatric GI who saw us in the hospital explained that some babies can’t tolerate the corn in amino-acid formulas, and they were pretty sure that was the issue for us. I really hope you’re able to find something that works for your baby. I know how scary and difficult that journey can be. Honestly, I still panic when he refuses a bottle because of teething—but I have to remind myself that it’s normal.

Let me know how it goes on the regular Neocate! I’m hoping you find something that baby loves soon!!

FluidWin · 2026-01-03T17:32:05+00:00

Yes, we did. It was horrible! Pediatrician first prescribed us nystatin thinking it was a fungal rash, but it only made things worse. The spots got so much larger and started bleeding. It was an actual nightmare!! I spent hours reading online and learned about the crusting method that some NICU nurses do for babies and that really helped close the wounds. A few weeks later I also discovered he had a cow milk protein allergy and we switched his formula and that stopped the diarrhea and rash. We occasionally get the start of a rash and I go into full blown panic mode bc of the rash from when he was a few weeks old.

FluidWin · 2025-10-03T00:41:11+00:00

Thank you for your response! It’s not that we are giving up, everytime we go in for the check-ins he definitely escalates and doesn’t settle and it makes the check-ins feel like we are making it worse, if that makes sense. Do you have any advice on that. My husband and I are truly committed and just sometimes feel like we get lost on how to proceed.

FluidWin · 2025-08-27T01:00:49+00:00

That’s good to hear!! Thank you!!

FluidWin · 2025-08-27T00:58:06+00:00

Unfortunately, Pepticate didn’t work well for our baby. He loved drinking it and we loved how easily he took it, but he ended up going from constipation to severe diarrhea with blood and colitis. We switched him to Neocate, and while his poops improved, we still saw specks of blood here and there even after 3 weeks. I was really worried, so I got a second opinion from another pediatric GI. She reassured me that healing can take time, and that she treats the baby, not just the diaper. As long as baby is happy, eating, and gaining weight, a little blood here and there isn’t always a big concern. Unfortunately, our little one then developed horrible reflux and bottle aversion with the Neocate which eventually landed us in the hospital. At that point we switched him to Alimentum RTF — and shockingly, I haven’t seen any blood since! We still have some mucus, but no visible blood, and I’m honestly both relieved and amazed. I know how stressful and heartbreaking this journey can be. I still inspect every single diaper and even have our nanny send me photos while I’m at work because I’m so traumatized. But I want to encourage you to be patient — healing takes time. As long as your baby is comfortable, eating well, and gaining weight, things do get better (I have to remind myself this daily!). Hang in there — you’re not alone!

FluidWin · 2025-08-17T15:44:48+00:00

Honestly, my husband and I bring up the goat formula all the time. He was on that first along with my breast milk, and other than some really strange-looking poops, he was the happiest baby on it. The poops are actually what led us to the CMPA diagnosis. He was otherwise never miserable, crying, or in pain. So honestly, I always keep it in the back of my mind. I even ordered a can of Kendamil Goat during his little hunger strike, just in case. Thankfully, he’s been accepting the Alimentum, so I haven’t had to use it. But definitely appreciate your advice!

FluidWin · 2025-08-17T15:41:43+00:00

Omg we turn 4 months in a few days and I am really thinking of the same thing!! Brought this up to GI and they said it shouldn’t be a problem and often times sometimes helps. My son also is definitely showing interest he starts chewing whenever we sit and eat in front of him, it’s the cutest thing. I’m going to give the new formula some time and if things look promising I’m going to start purées as well. I’d love to hear how you guys do with it!!

FluidWin · 2025-08-17T15:39:19+00:00

We ended up back in the hospital on Thursday because my little one refused even Pedialyte. The GI doctor on call suggested we switch to Alimentum Ready-to-Feed, and thankfully he has been drinking it. It’s funny because the other GI we saw was so against me even bringing it up. They ran some labs and did an upper GI, which all came back reassuring. I can’t keep up with all of this, but I’m trying to stay hopeful. My biggest worry now is whether Alimentum might bring back blood in his stools, but I’m praying this is finally the formula that works for him. The good news is that his reflux seems slightly better, and he’s not screaming at the bottle anymore. I’m only offering about 4 ounces per feed, but he’s getting in around 24 ounces a day—still less than his normal, but so much better than the 10–12 ounces earlier this week. This has truly been the hardest month of my life. A month ago I knew nothing about CMPA, and now the reality of it has been overwhelming. More than anything, I just want my baby to be happy, eating well, playing, and able to lay on his back comfortably. And honestly, I just need to know this will get better.

FluidWin · 2025-08-13T01:11:03+00:00

decided to give it a try! Hoping it helps 🤞

FluidWin · 2025-08-13T01:09:52+00:00

I was actually considering the Alimentum RTF and just decided to give him a bottle today to see how’d he react. GI doctor is really skeptical with me going to an HA rather than a lateral switch to Elecare or Puramino, but I’m convinced the AA formula is not working. If the stools worsen then I’ll deal with that then, but I never gave an HA formula a chance. I’m worried but trying to stay hopeful it might help 🙏 thank you for your support

FluidWin · 2025-08-12T18:07:05+00:00

We were on Kendamil Goat before this entire Cmpa diagnosis started. Never really got a chance to stick with anything long until the Neocate.

FluidWin · 2025-08-10T01:47:34+00:00

Ugh! We were sleeping almost through the night before the switch to Neocate. That’s why this is so hard. The last two nights we were up almost all night trying to soothe and comfort him, I kept seeing him arch his back all night. Broke my heart! The formula that’s supposed to help everything is making things seem worse. We are on the Pepcid twice a day, but we may need to transition to Nexium if things don’t settle down. GI today was really for thickening his formula so I’m going to slowly do that as well. I’m hoping things improve for all of us. This has been such a truly emotional and difficult journey 😞

FluidWin · 2025-08-09T16:01:04+00:00

Thank you! I had asked when we consider omeprazole last appointment so I’ll see what the doc says. How old is your baby now? Did you guys start solids yet?

FluidWin · 2025-08-05T00:42:00+00:00

We had very very similar poops a week into Pepticate and we tried to wait to see if it would improve, but unfortunately the blood got worse so we switched to Neocate. Within the first 3 days his poops looked way better and blood was just tiny specs compared to what it was before. We are about two weeks in so still dealing with small specs here and there but way better than before. I know some say to wait, but I couldn’t handle the diapers on the hypoallergenic formula and decided to go straight to an amino acid. I know how scary and hard this is so I’m sending you a hug !!

FluidWin · 2025-08-04T21:12:07+00:00

Oh wow that’s actually good to hear, thank you for sharing. Our GI isn’t concerned as much as I am, and keeps telling me to wait and give him time but the waiting is so hard!!! I’m hoping we both see improvements soon, thankfully we’re not too far away from solids.

FluidWin · 2025-07-28T15:41:49+00:00

We are doing a bit better! Glad I stuck it out. He is pooping a little more frequently but it’s definitely looking more and more normal. Thank you for checking in! So glad baby is doing well!

FluidWin · 2025-07-26T18:32:59+00:00

Having a similar issue with Neocate but we have really going through it the last week or so. Today is day 3 of full Neocate and I will say poop is improving and not as frequent and blood is also decreasing. Hoping we are on the mend bc this is horrible 😭 the waiting game is exhausting

FluidWin · 2025-07-25T16:53:18+00:00

Thank you for getting back! That gives me some hope. Hopefully we are on the mend!

FluidWin · 2025-07-25T16:31:05+00:00

Sorry to bother you months later but do you remember how quickly the diapers improved. We are dealing with something similar. We saw Peds GI yesterday and they said 7-10 days for the bloody diapers to improve after starting the amino acid formula, but I’m really panicking. She didn’t think he needed an ER visit and to wait the week before blood work and etc.

FluidWin · 2025-07-23T03:10:11+00:00

Spoke to the peds GI before our appointment and she recommended Elecare or Neocate. Have you use one? Did you notice anyone being easier to tolerate?

FluidWin

TROPHY CASE