CMPA help! | Mumsnet

Austin0210 · 2023-03-04T04:38:37+00:00

DD has just been diagnosed with CMPA and has started on Aptamil Pepti 1 (she's 16 weeks old) she started this about 9 days ago. She is still getting really bad wind that smells really bad and having slight refluxy regurgitation but nothing like the projectile vomits we had before. She's also now pooing every day!! She used to be every 3-4. Does this sound like we may be on the road to recovery? I'm curious to know how long it took for symptoms to improve in your LO's! Or whether the presence of those other symptoms suggests we need to move to a different milk? Neocate would be our next one according to dietician

Purple89 · 04/03/2023 05:21

Hey! I'm no expert but my 16 week old daughter is on Pepti 1 and showed similar effects in the initial stages. For her, these were signs of improvement, she is ten times better on the new milk. It also stopped her having watery poos, they are now much more solid. Unfortunately she still does have a bit of reflux though, which I try and remedy with carobel. She is also on omaprezole.
Is your DD on any medication?

Twizbe · 04/03/2023 06:44

My son was diagnosed at 16 weeks too. We combi fed with pepti 1.

It improved his symptoms and he wasn't throwing up his milk. He gained more weight too.

We also started weaning at 4.5 months and that helped with his weight issues even more.

Tbh pepti stinks to high heaven and I wish I'd had the confidence to move back to EBF once we'd started weaning ... oh well live and learn right.

My son is still allergic at 6 so I'm not sure there is a recovery as such. We've left it totally to him now as to whether he wants to try dairy again.

Original poster

Austin0210 · 04/03/2023 09:45

Purple89 · 04/03/2023 05:21

Hey! I'm no expert but my 16 week old daughter is on Pepti 1 and showed similar effects in the initial stages. For her, these were signs of improvement, she is ten times better on the new milk. It also stopped her having watery poos, they are now much more solid. Unfortunately she still does have a bit of reflux though, which I try and remedy with carobel. She is also on omaprezole.
Is your DD on any medication?

She is also on omeprazole. I had debated maybe she needs some carobel aswell because the milk is really thin.
I'm glad your daughter improved on it!

OP posts:

Original poster

Austin0210 · 04/03/2023 09:47

Twizbe · 04/03/2023 06:44

My son was diagnosed at 16 weeks too. We combi fed with pepti 1.

It improved his symptoms and he wasn't throwing up his milk. He gained more weight too.

We also started weaning at 4.5 months and that helped with his weight issues even more.

Tbh pepti stinks to high heaven and I wish I'd had the confidence to move back to EBF once we'd started weaning ... oh well live and learn right.

My son is still allergic at 6 so I'm not sure there is a recovery as such. We've left it totally to him now as to whether he wants to try dairy again.

I'm really hoping she gains weight too, she has dropped from 50th down the just below the 9th line.. which is worrying!

With the weaning, how did you start it off? I have been debating on whether to do it. She has a slight aversion to her bottle I guess from the pain it's been causing so thought weaning might help to get some extra calories in

OP posts:

Twizbe · 04/03/2023 11:47

I wouldn't wean early without medical clearance. We had a great dietician work with us.

Her advice was really helpful.

We started with breakfast (as you're always at home) and we started with baby rice as there are no other allergens or taste. We made this with his formula so it was a way of getting more calories into him. After 6 months we introduced Wholemeal toast with dairy free butter and marmite alongside his rice.

Once he was happy with breakfast (and still before 6 months) we introduced tea. We did tea next as again we were always at home. We used pouches so we could have a variety of purée with less effort. It also helped us to keep a track of calories.

Finally we did lunch and this was just before 6 months.

He took to food really well and gained a lot more weight that way. He would still be sick after his formula and sometimes after food.

He was born on the 91st and dropped all the way off the lines. With weaning he gained it back over the rest of the year. That said, he is also a very long thin person. Even now he's on the 99.6th percentile for his height and the 91st for weight. There are a couple of men on both sides of his family that are similar builds.

MissJam · 04/03/2023 21:29

Hi OP, think we have been on Aptamil pepti now for 4-5 weeks. His wind is so offensive… it’s worse than it was before. Proper rotten egg smells. He also still only poos - very green - once every other day. The spit up has slightly improved, though we have gone back to feeding less but more frequently because he’s suffered terribly with night wind and no one is getting any sleep. He still brings up strange smelling clear liquid, but it doesn’t smell like acid.

just waiting for a paeds referral to come through to speak to someone who hopefully knows more!

Has your GP given you any indication whether they will refer you to paeds if there is or isn’t any improvement?

Original poster

Austin0210 · 05/03/2023 09:56

MissJam · 04/03/2023 21:29

Hi OP, think we have been on Aptamil pepti now for 4-5 weeks. His wind is so offensive… it’s worse than it was before. Proper rotten egg smells. He also still only poos - very green - once every other day. The spit up has slightly improved, though we have gone back to feeding less but more frequently because he’s suffered terribly with night wind and no one is getting any sleep. He still brings up strange smelling clear liquid, but it doesn’t smell like acid.

just waiting for a paeds referral to come through to speak to someone who hopefully knows more!

Has your GP given you any indication whether they will refer you to paeds if there is or isn’t any improvement?

We ended up going to a private dietician because the GP wasn't helping too much and I knew there was more to her being diagnosed as lactose intolerant and reflux....

She has pooed 5 out of 6 days and it has turned yellow and seedy (she hasn't pooed every day since the week she was born!) Wind is still bad

Our dietician said that the next step would be neocate because it doesn't contain any CMP at all. Apparently aptamil does still contain it but broken down, she said 90% of babies agree with it but 10% don't. It sounds like you definitely need an amino based formula for your lo! I hope they get you referred quick, maybe you could see whether the GP would be willing to prescribe something different?

I've got the healthvisitor on Tuesday for a weigh in and I'm absolutely dreading it, I know she hasn't put on enough weight but I'm hoping they give me some slack because we finally have a diagnosis..

OP posts:

Original poster

Austin0210 · 05/03/2023 09:57

Twizbe · 04/03/2023 11:47

I wouldn't wean early without medical clearance. We had a great dietician work with us.

Her advice was really helpful.

We started with breakfast (as you're always at home) and we started with baby rice as there are no other allergens or taste. We made this with his formula so it was a way of getting more calories into him. After 6 months we introduced Wholemeal toast with dairy free butter and marmite alongside his rice.

Once he was happy with breakfast (and still before 6 months) we introduced tea. We did tea next as again we were always at home. We used pouches so we could have a variety of purée with less effort. It also helped us to keep a track of calories.

Finally we did lunch and this was just before 6 months.

He took to food really well and gained a lot more weight that way. He would still be sick after his formula and sometimes after food.

He was born on the 91st and dropped all the way off the lines. With weaning he gained it back over the rest of the year. That said, he is also a very long thin person. Even now he's on the 99.6th percentile for his height and the 91st for weight. There are a couple of men on both sides of his family that are similar builds.

Thank you! I'm going to have a chat with the dietician and see whether she would recommend!

I'm so glad to hear your LO went up in weight!

OP posts:

Coffeeandcrocs · 05/03/2023 10:14

Pepti 1 still contains dairy, just more broken down which works for some cmpa babies but not others. They give this one first because it's cheaper for the NHS to prescribe - you might need an amino acid based formula which is completely dairy free.

Twizbe · 05/03/2023 10:51

I wouldn't bank on it with the HV. Took DS to be weighed before we started weaning and stupidly told her why. She made such a fuss about his bad it was to wean early despite us have paediatrician and paediatric dietician approval

Original poster

Austin0210 · 05/03/2023 11:31

Twizbe · 05/03/2023 10:51

I wouldn't bank on it with the HV. Took DS to be weighed before we started weaning and stupidly told her why. She made such a fuss about his bad it was to wean early despite us have paediatrician and paediatric dietician approval

They have a way of making you feel like you are the worse parent to ever exist sometimes!
When DD dropped a couple of centiles I genuinely thought I was going to be placed on a safeguarding register or something with how they spoke to me

OP posts:

MissJam · 05/03/2023 11:31

@Austin0210

Thank you for info re the dietician! Our LO has probably had say 1/10 poos yellow and seedy. The rest they are green and have been since birth.

I might try and get an appointment with the GP (supposedly they’ve made booking them easier…) to see what they say.

Did your LO have a rash? Mine hasn’t and although speaking to Allergy UK the lady said they all present differently I feel we won’t be top of the list as other babies that do have rashes. If he has CMPA, it is most likely ‘mild’ compared to others but I can tell it’s causing him discomfort with the wind, lack of poo and reflux.

He is also on the 91st centile.

We used to tilt his Moses basket on one end to help him which might have done something but that was before the dreaded ‘sleep regression’ and moving to his new bed which can’t be tilted.

I really hope that things improve for your LO, please keep me updated on how you get on going forward x

Original poster

Austin0210 · 05/03/2023 11:45

MissJam · 05/03/2023 11:31

@Austin0210

Thank you for info re the dietician! Our LO has probably had say 1/10 poos yellow and seedy. The rest they are green and have been since birth.

I might try and get an appointment with the GP (supposedly they’ve made booking them easier…) to see what they say.

Did your LO have a rash? Mine hasn’t and although speaking to Allergy UK the lady said they all present differently I feel we won’t be top of the list as other babies that do have rashes. If he has CMPA, it is most likely ‘mild’ compared to others but I can tell it’s causing him discomfort with the wind, lack of poo and reflux.

He is also on the 91st centile.

We used to tilt his Moses basket on one end to help him which might have done something but that was before the dreaded ‘sleep regression’ and moving to his new bed which can’t be tilted.

I really hope that things improve for your LO, please keep me updated on how you get on going forward x

She doesn't have a rash but does have a patch of dry skin on her forehead just before the hairline which according to dietician is also a symptom of CMPA.

All together her symptoms have been - reflux, vomiting, pooing every 3-4 days, not gaining weight, bottle aversion

So not the classic signs I see on Google! I would ask the GP about the other formula. I'm still debating on whether she needs a change.. i have another app with dietician on Tuesday so will ask then!

I would say if you can get together the money for an app with a dietician specialised in infant feeding then you won't regret it, the app cost £150 but I think this would vary all over the country!

OP posts:

MissJam · 05/03/2023 12:06

@Austin0210

Thanks again, he also has a couple of patches of dry skin but that got dismissed.

Good luck at your app on Tuesday!