u/One-Shine8308

Sorry for the long post in advance.
I’m not seeking medical advice necessarily! More so looking for other experiences/ things to mention to my pediatrician to get them to take me seriously.

My 3.5 month old daughter has been struggling since she was 2 weeks old. We were originally told she had colic. After persistent crying, obvious discomfort, and recurring diaper rashes we saw a different doctor that diagnosed her with cmpa( tested Lactoferrin levels in stool) and silent reflux. We immediately started Similac Alimentum and peptic. We noticed improvement for about two weeks before things went downhill again. Retested her stool after a month and still had high Lactoferrin. So we switched to Neocate. She did terrible initially because of the reflux it caused so we started using gel mix. That has helped significantly with the spit up but she still seems to struggle with silent reflux( gulping, swallowing noises, sour look on face when burping, constant wet sounding burps, lots of hiccups).

She is still having intense crying episodes which seem to have gone from mostly at night to on and off all day at almost 16 weeks old. She is on Pepcid twice a day but I’m not sure it does anything for her. 3 weeks on Neocate and we’ve noticed no real improvement in her fussiness. Blood in stool was never one of her symptoms but I noticed a small spec in her stool when I changed her diaper earlier. Could she still be reacting to Neocate? Or caused by something else or just a random one off? She is gassy all the time and spends most of the night wiggling and grunting. She has always put her hands in her mouth when her stomach was bothering her but now she’s doing it more frequently and trying to mouth everything else in sight. Unsure if that’s from discomfort, just normal development or a sign of teething? And her newest weird symptom is throwing her left arm above her head while in her bouncy seat or being held upright, tensing up and screaming/fussing, followed by crying.

I know these are all concerns that should be addressed by a pediatrician and we’ve been in contact with them often, but our pediatricians have been super unhelpful because she’s still gaining weight. There’s a 3 week waiting period to get into the other pediatrician office in our area and she has a GI appointment but it’s not until the end of October when she’ll already be 7 months. We just keep getting told it’s colic and she’ll snap out of it at 4 months. But the closer we get to that mark the less likely that seems. I’m at a loss and could really use any other experiences and advice if you’ve been through this. At this point we know all of the soothing techniques, I just really want to make her actually feel better as she’s such a happy baby when she’s not crying. I’m concerned this is something that actually needs to be addressed medically and she won’t just “snap” out of it like we’re being told.

Symptoms: intense crying/fussing on/off all day, congested sounding in nose and sometimes chest, grunting/wiggling when sleeping, gas, chewing on hands, stiffening/arching and then getting upset, rubbing face either with hands or against us, gulping and making hard swallowing sounds a lot, and every now and then she’ll go stiff and scream/ fuss like she’s agitated before she starts crying.

I appreciate any responses at all!!

Sorry for the long post in advance.
I’m not seeking medical advice necessarily! More so looking for other experiences/ things to mention to my pediatrician to get them to take me seriously.

My 3.5 month old daughter has been struggling since she was 2 weeks old. We were originally told she had colic. After persistent crying, obvious discomfort, and recurring diaper rashes we saw a different doctor that diagnosed her with cmpa( tested Lactoferrin levels in stool) and silent reflux. We immediately started Similac Alimentum and Pepcid. We noticed improvement for about two weeks before things went downhill again. Retested her stool after a month and still had high Lactoferrin. So we switched to Neocate. She did terrible initially because of the reflux it caused so we started using gel mix. That has helped significantly with the spit up but she still seems to struggle with silent reflux( gulping, swallowing noises, sour look on face when burping, constant wet sounding burps, lots of hiccups).

She is still having intense crying episodes which seem to have gone from mostly at night to on and off all day at almost 16 weeks old. She is on Pepcid twice a day but I’m not sure it does anything for her. 3 weeks on Neocate and we’ve noticed no real improvement in her fussiness. Blood in stool was never one of her symptoms but I noticed a small spec in her stool when I changed her diaper earlier. Could she still be reacting to Neocate? Or caused by something else or just a random one off? She is gassy all the time and spends most of the night wiggling and grunting. She has always put her hands in her mouth when her stomach was bothering her but now she’s doing it more frequently and trying to mouth everything else in sight. Unsure if that’s from discomfort, just normal development or a sign of teething? And her newest weird symptom is throwing her left arm above her head while in her bouncy seat or being held upright, tensing up and screaming/fussing, followed by crying.

I know these are all concerns that should be addressed by a pediatrician and we’ve been in contact with them often, but our pediatricians have been super unhelpful because she’s still gaining weight. There’s a 3 week waiting period to get into the other pediatrician office in our area and she has a GI appointment but it’s not until the end of October when she’ll already be 7 months. We just keep getting told it’s colic and she’ll snap out of it at 4 months. But the closer we get to that mark the less likely that seems. I’m at a loss and could really use any other experiences and advice if you’ve been through this. At this point we know all of the soothing techniques, I just really want to make her actually feel better as she’s such a happy baby when she’s not crying. I’m concerned this is something that actually needs to be addressed medically and she won’t just “snap” out of it like we’re being told.

Symptoms: intense crying/fussing on/off all day, congested sounding in nose and sometimes chest, grunting/wiggling when sleeping, gas, chewing on hands, stiffening/arching and then getting upset, rubbing face either with hands or against us, gulping and making hard swallowing sounds a lot, and every now and then she’ll go stiff and scream/ fuss like she’s agitated before she starts crying.

I appreciate any responses at all!!

I’ve posted before about still having trouble after starting Neocate but now my first time mom brain has a new concern lol. My 3.5 month old baby has been getting gel mix in all of her bottles for about a week now. We mix the water in advance and I’ve noticed small black/brown specs settle to the bottom of the bottle. Gel mix customer service assured me that it’s a completely normal and harmless result of roasting the carob beans that are used. However yesterday and today I’ve noticed lots of small black specs in her stool, and they were unable to tell me if that was normal or not. I’ll obviously be consulting her pediatrician but I was hoping to find some confirmation from other parents if this happened when your LO was using gel mix? If it’s not from the gel mix I’m concerned it may be old blood, although blood has never been one of her CMPA symptoms. Her reflux has improved greatly but she still has some painful silent reflux even with the gel mix and Pepcid twice a day. We are also still dealing with lots of colic type crying even on the Neocate, so we’re trying to figure out if she’s still not tolerating something and needs to switch formula yet again, or if the reflux is causing most of her pain. Her pediatrician has been less than helpful because she’s gaining weight properly, and she’s unable to get in to GI until the end of October so we’re sort of navigating this blind. I’d appreciate any experiences or advice!

Hi there! I’m desperately searching for stories or advice from parents who have been in this situation. My 14 week old was diagnosed at 2 weeks with colic, then at 8 weeks with cmpa and silent reflux. Her symptoms were intense colic crying, recurring diaper rash, mucus in stool, lots of gulping and swallowing, and just obvious stomach discomfort(gas, drawing up legs, grunting, twisting her body after eating, lots of wiggling in her sleep).

She was diagnosed after her Lactoferrin stool levels were confirmed to be very elevated. We started Pepcid and Similac Alimentum powder form immediately. She took to the Alimentum great and there were major improvements in symptoms about a week after starting both, to the point that all we were left dealing with was gassiness and minor fussiness. After about 3 -4 weeks however her colic crying episodes and reflux started back up again. We retested Lactoferrin and it was still elevated so we switched to Neocate although her doctor just said she has colic and will straighten out at 4 months.

After 2 weeks on neocate we have noticed no real improvement, if anything she’s worse in ways. Her reflux is awful to the point where she’s spitting up 20+ times a day some days, will only take 2-3 oz before she’s twisting and writhing like she’s in pain or uncomfortable, having coughing/ choking episodes, fussy all day long unless sleeping or being distracted, wants to only be held standing up or with her body straightened, and still has obvious stomach discomfort.

We went to another pediatrician today after feeling unsupported by our normal doctor and we were told that the test that diagnosed her is basically dismissed by GI doctors at this point because high levels can be normal in infants. So potentially she doesn’t even have cmpa? They switched her Pepcid dose to twice a day, referred her to GI, and we were told to try PurAmino. I‘m just hesitant to put her on another formula that’s extremely similar to what she’s already on thats causing so many issues. We have her back on the Alimentum for the time being with the adjusted pepcid dose because she seemed to do better on that than the Neocate.

Any advice? I’ve read about corn being a potential trigger and Alimentum RTF being the answer for some. Or did switching to a different elemental formula help your baby? She is such a happy girl when she’s not in pain or uncomfortable and I’m desperate to make her feel better, but it seems everything I try makes her worse. Thanks in advance!!