u/seismologistics

My baby is confirmed CMPA.

I highly believe is confirmed SOY as well - breaks out in rash on both Nutramigen and Puramino.

We tried Alfamino and she broke out in red blotches that spread for ten mins then vanished during feeds.

We settled on neocate a long time ago but she gets significant gas pains and stomach cramps when she drinks it. She’s also constipated on it. This is her main symptom of cmpa (constipation). We don’t know what to do. We have tried to thicken her milk to see if it helps with the gas pains but it doesn’t. She only gets these pains on amino acids. Anyone have any advice, I’m struggling to get her to drink enough. I’m thinking she’s coconut sensitivity too at this stage.

These are the only formulas I can access where we live so I’m really lost.

We are waiting to get a gi and allergy referral from paeds and it’s going to take some time.

Hello. My baby is now 5 months old. My baby girl was formula fed from birth SMA. She passed stools normally until she was 8 days old. At 8 days she became really constipated. She passed hard pebbles. Took her to hospital they said change milk.

We changed to kendamil organic and saw no change. She stopped passing her bowels unless she had a suppository. It always came out a hard lump. At 3 weeks old the hospital put her on lactulose which didn’t help. There was still always a hard lump and either pasty or softish stool behind. She was very distressed with her stools.

At 3.5 weeks they put her on Nutramigen. She began to pass naturally but remained on lactulose. Her stool was very very dry and crumbly and acidic. She started to develop a rash like spots all over.

At 5 weeks old she was admitted to hospital for other complications - laryngomalacia. At the same time she had two specks of blood in her stool, the first one didn’t seem to be connected to the stool itself and the second one was with a tiny speck of mucus.

The hospital at this point diagnosed CMPA. She was put on Neocate but had severe stomach and bowel cramps whilst taking it. She stopped feeding from this. She was put on an ng tube for her laryngomalacia. Whilst running via the tube she continued to have these cramps and severe distress with the Neocate. Her stools started coming naturally and were loose and full of thick I mean thick mucus. They became explosive 8-10 times a day. A few days later we sent a stool sample and she had picked up astrovirus. Her stools went on like this for a few weeks while she was in the hospital (5 week admission) but we had a repeat stool sample sent and it came back negative for astrovirus.

She also could not tolerate Neocate stomach wise so we tried puramino and alfamino with the dietician (the only two other AA available here). On puramino she developed the same rash as nutramigen (both are soy based so to me screams soy allergy) and on Alfamino she broke out in red blotches every time she drank. She was screaming on all of these milks anytime she ingested them.

Dietcians put her back to Neocate because at the time they thought it was her best option. They never did the milk challenge or anything like that. They also don’t believe she is soy allergy despite her breaking out in the same rash everytime she has a soy based milk.

Long story short. When we discharged from the hospital for a few days she was also having the explosive diarrhoea thick thick mucus stools. After a few days at home she became constipated on Neocate. She went every 2nd day but would strain in some pain or it would come out super thick and sticky.

Months have passed and she’s remained constipated on Neocate. We have told her team and they keep telling us to continue 2.5ml lactulose twice a day. I have told them it’s not working for a long time.

Every morning around 5/6 she wakes up and is agitated in her bowels semi straining. Every 2-3rd morning when I pick her up she’ll do a bowel motion after some pushing.

We have tried her on probiotics which constipated her as well, her stool came out very firm and she had bowel pain. We also tried a tiny few spoonfuls of baby rice which caused constipation and bowel pain

Recently though our community dietcian asked if we wanted to do the milk challenge. We were recommended to try a comfort milk or goats milk. I went with goats as she’s never had it before. My baby is drinking it much better than Neocate, isn’t having stomach or bowel cramps. But after a few days she became constipated even worse than Neocate.

We went to the gp who said he thinks something else is going on and has given us movicol instead. He said he will refer us to GI when she’s on solids because they apparently won’t see her until she is - so that referral will be in a months time and then could be waiting months to be seen. We have been advised to continue the goats milk because she is happier on it and is drinking it and keep a close eye on her symptom and constipation. GP really doesn’t think it’s CMPA neither does com Dietcian as if it was CMPA she shouldn’t be constipated on amino acids.

When I think back now the only time she’s ever not been constipated was when she was on ready made milk at birth or when she was given premade formula in her hospital stay. I am now wondering if it could be an issue with the water from the tap? I use a prep machine and have tried just boiling the tap water too. But I saw another mom have this issue and she started using boiled bottle water instead and the constipation resolved. Obviously this is a long shot but I’m going to try it and see if it helps. There’s no harm.

Wondering if anyone has any ideas on what could be going on? Really struggling!!

Has anyone successfully weaned their baby off an ng tube? In particular with a laryngomalacia baby and a baby with bottle aversion. If so, how?

My little one has laryngomalacia and is tube fed 4 months. At 5 weeks old medics placed her on a premie bottle for swallow safety but she fell asleep on it every time because she had to work very hard to get milk out.

Fast forward 15 weeks so she’s now 20 weeks old. She developed full bottle aversion around 12 weeks and we managed to get her into a different bottle, the same brand as the premie one but she’s on a bigger teat. Problem is she still has wrong associations with the bottle….

She will only take it calmly when she wants to sleep. At this point she’ll keep sucking and sucking until she falls asleep. Sometimes when she gets the teat she instantly shuts her eyes. She normally gets 2-3oz on a good day like this but it’s very inconsistent depends how fast she falls asleep.

When she seems hungry but isn’t sleepy she will only take enough to curb her hunger - 30-40ml. Then she’ll take it out so I normally burp and then she’ll completely reject it.

I don’t know what to do. The doctors, speech, dietcians won’t help us. They think it’s all the laryngomalacia and she’ll ’grow out of it’ but it is more than that. She also had surgery for the laryngomalacia and has improved since. Her swallow is also much better. Honestly though she doesn’t feel true hunger anymore and associates the bottle with sleep not food or calories. She has no motivation for it. It’s very hard to tell if she’s even hungry, the only time she seems hungry is when she wants to sleep and believe ive offered after naps, during wake windows, times when she’s not due a nap. I just can’t do this anymore. My mental health is struggling.

How do I get her to take it? If I do the Rowena method it could be a disaster because lack of energy will effect her feed energy with the laryngomalacia.

Should I try a different bottle? She will only accept Dr brown narrow but I’m nearly certain this is why she associates it with sleep because the premie is the same shape. She did have tongue tie which was undiagnosed and I think that’s why she got bottle aversion to begin with. It’s been snipped 3 weeks ago.

We also know she’s capable of larger volumes because she can take 70-100 within a few minutes in those sleepy feeds.

Please any advice I’m really lost and can’t do this much more. Have no help from anyone here.

Has anyone successfully weaned their baby off an ng tube? In particular with a laryngomalacia baby and a baby with bottle aversion. If so, how?

My little one has laryngomalacia and is tube fed 4 months. At 5 weeks old medics placed her on a premie bottle for swallow safety but she fell asleep on it every time because she had to work very hard to get milk out.

Fast forward 15 weeks so she’s now 20 weeks old. She developed full bottle aversion around 12 weeks and we managed to get her into a different bottle, the same brand as the premie one but she’s on a bigger teat. Problem is she still has wrong associations with the bottle….

She will only take it calmly when she wants to sleep. At this point she’ll keep sucking and sucking until she falls asleep. Sometimes when she gets the teat she instantly shuts her eyes. She normally gets 2-3oz on a good day like this but it’s very inconsistent depends how fast she falls asleep.

When she seems hungry but isn’t sleepy she will only take enough to curb her hunger - 30-40ml. Then she’ll take it out so I normally burp and then she’ll completely reject it.

I don’t know what to do. The doctors, speech, dietcians won’t help us. They think it’s all the laryngomalacia and she’ll ’grow out of it’ but it is more than that. She doesn’t feel true hunger anymore and associates the bottle with sleep not food or calories. She has no motivation for it.

How do I get her to take it? If I do the Rowena method it could be a disaster because lack of energy will effect her feed energy with the laryngomalacia.

Should I try a different bottle? She will only accept Dr brown narrow but I’m nearly certain this is why she associates it with sleep because the premie is the same shape. She did have tongue tie which was undiagnosed and I think that’s why she got bottle aversion to begin with. It’s been snipped 3 weeks ago.

We also know she’s capable of larger volumes because she can take 70-100 within a few minutes in those sleepy feeds.

Please any advice I’m really lost and can’t do this much more. Have no help from anyone here.

Has anyone successfully weaned their baby off an ng tube? In particular with a laryngomalacia baby and a baby with bottle aversion. If so, how?

My little one has laryngomalacia and is tube fed 4 months. At 5 weeks old medics placed her on a premie bottle for swallow safety but she fell asleep on it every time because she had to work very hard to get milk out.

Fast forward 15 weeks so she’s now 20 weeks old. She developed full bottle aversion around 12 weeks and we managed to get her into a different bottle, the same brand as the premie one but she’s on a bigger teat. Problem is she still has wrong associations with the bottle….

She will only take it calmly when she wants to sleep. At this point she’ll keep sucking and sucking until she falls asleep. Sometimes when she gets the teat she instantly shuts her eyes. She normally gets 2-3oz on a good day like this but it’s very inconsistent depends how fast she falls asleep.

When she seems hungry but isn’t sleepy she will only take enough to curb her hunger - 30-40ml. Then she’ll take it out so I normally burp and then she’ll completely reject it.

I don’t know what to do. The doctors, speech, dietcians won’t help us. They think it’s all the laryngomalacia and she’ll ’grow out of it’ but it is more than that. She doesn’t feel true hunger anymore and associates the bottle with sleep not food or calories. She has no motivation for it.

How do I get her to take it? If I do the Rowena method it could be a disaster because lack of energy will effect her feed energy with the laryngomalacia.

Should I try a different bottle? She will only accept Dr brown narrow but I’m nearly certain this is why she associates it with sleep because the premie is the same shape. She did have tongue tie which was undiagnosed and I think that’s why she got bottle aversion to begin with. It’s been snipped 3 weeks ago.

We also know she’s capable of larger volumes because she can take 70-100 within a few minutes in those sleepy feeds.

Please any advice I’m really lost and can’t do this much more. Have no help from anyone here.