Nutramigen nightmare

[CursesAndMagic]

My baby is now 9 months old and was fine as could be expected up until 5 months apart from constipation when she started really refusing all feeds. She was screaming waking at night and generally seemed to be in pain. Two months ago we were prescribed nutramigen on the advice of the pedi who said CMPA but doctor and other health professionals said not possible as she was not always refusing feeds and doesn’t have the typical symptoms. Her bowels regulated on nutramigen and she tends to go every day once sometimes twice and some days she won’t go or have a hard movement. When firsts prescribed nutramigen she took straight to it but now every bottle is a fight. She will only feed in her room in the dark sometimes lying down sometimes not. Sometimes she needs the mobile on to feed and sometimes like today she will have 2oz (usually has 4oz for prenap bottle). She never had taken more than 4oz per bottle is okay with solids but doesn’t take much of this either. She will take 1/2oz then I have to leave her a while to roll around in cot and keep going back to feed her over a period of time. Last night she took an hour to have the bottle but wouldn’t sleep because she was hungry but wouldn’t take it. She isn’t teething at the minute and we have tried teething products Calpol etc before bottles and nothing seems to work. Some bottles she will be fine with but others she refuses to open her mouth and gets worked up so I stop trying but she doesn’t always have enough for her age and size. Could this all be down to the taste of nutramigen? She’s fine having Calpol, infacol etc so I’m thinking it’s the smell and taste. She will use a sippy cup for water but not for milk. Any suggestions? I’m honestly exhausted and I’m 4 months pregnant on top of it. It’s been 3 months now. She settles herself to sleep alone fine without feed (has this before she gets put down then had a little roll about) she’s not a problem self soothing but she is if she won’t take bottle before bed or nap. I’m struggling.

Have you tried adding a couple of drops of vanilla essence to the bottle to improve the taste?

My DC went through a phase like that around that age, so maybe it's not something physically wrong with her as such. (Only mentioning this because you said she took the nutramigen fine at the start)
Have you given her a dummy?
What I used to do is give him his dummy, let him suck on it for a few seconds then swap dummy with milk. It used to do the trick and he would start drinking.

I have 4 DC - 2 loved their milk, 2 were complete refusers by 11 months and had lost interest way before then.

Can you look at ensuring the nutrients are in her solids diet instead? I know it's far from ideal for them to not have milk at this age but looking at her diet as a whole may be a better way forward. Does she eat well?

She does have a dummy yeah, I’ve tried vanilla and still no. I don’t actually think it’s the taste more as she’s just being fussy she’s been like this on and off for around 3-4 months but this period is like a solid month. It’s hard to get her to feed. She will have a bottle in the car, in the bath and such but at home really hit and miss. She will usually have 2-3oz then stop then I have to keep trying. Yesterday she was okay had around 660ml but it was hard to get to that usually she has around 7-800 but it’s hard with each bottle. I feel like I can hardly do anything because naps feeding bottles. Most babies have like 3 bottles at this age and I think yesterday she had 9 it’s such a waste of milk because I never know what she will take and she is extremely fussy with it when she has it. She’s not great with solids. She has weetabix pretty consistently so she gets some formula with that she had coconut yogurt and some veg and fruit but she doesn’t have much because her bottles are so spaced out I’ve tried leaving her longer cutting back on solids and nothing seems to make a difference we still have a struggle with the bottle.

My DS has CMPA. He reacted to nutramigen as it still contains CMP. We were given neocate instead. You could ask to try a different milk.

Have you been referred to a Paediatric Dietician? If not, I'd ask tour GP to refer you on Tuesday. They should do this ass matter of course for suspected CMPA.

Agree that she could be relating to the milk and associates it with tummy ache. Could you ask for a completely DF milk too?

The doctor said she hasn’t got milk allergy the Pediatrician said she has but she isn’t tested so the doctor won’t do anything

I would focus on increasing her solids.

The more stressed you get about trying to get her to have bottles the more she will
pick up on it and that will then also become a viscous circle.

It's very difficult when your GP isn't listening/on your side

Another vote here for Neocate.

It was fairly obvious that my DS had CMPA - so if you aren't convinced that this is the issue/your DC doesn't have any of the symptoms do press for another referral. There is no "test" for CMPA just exclusion (or at least that's what we experienced/were told). My GP was also hesitant to refer but keep persisting as annoying as it is. Eventually there was blood in his stool so they had no choice to be to refer.

We tried Nutramigen - as others have said - it still contains CMP so we didn't see any difference. Our pedi did say it would take some time to regulate once on the alternative milk.

Thing is you say that sometimes will happily drink it so because it's not constant it does make me think it's something else.
Has your baby been checked for tongue tie? Have you tried different bottles? MAM are excellent for colicky babies.
My DS would also not take the recommended amount for his age/weight either. I just prepared bottles up to the maximum I thought he would drink and then would make an extra oz at a time so limit the wastage. At 9m he was only taking 4/5oz per feed. We are now up to 7oz but fewer bottles per day iyswim.

Yeah it’s difficult isn’t it. I only question if it is CMPA because she had constipation quite bad she still does now some times but not as bad but this could be down to anything. And she was fussy with bottles. She had blood in one stool but doctor said it was due to straining as it was hard. So I don’t know really. Blood only happened once and never any other symptoms so I’m unsure. She had sma normal from 2 months after being breast fed (I was told to stop because constipation) then at 6 months she started refusing feeds. Just seems strange the symptoms would only start at 6 months

In honesty it doesn't sound anything like what we experienced with CMPA but I'm in no way a medical professional. My son would scream the house down after every feed, even when breastfed (because I was still having dairy). Poop was explosive and green snotty mucous. The blood was caused by inflammation of the bowl. Rarely if ever constipated.

Nutramigen does still have some dairy in it. When we tried to give him this he went nuts again.
I will say that it was very difficult to get him to drink it initially because it does taste absolutely vile. The neocate is slightly more palatable but as I said in PP he has never had the recommended volume for his weight/age. I just started to give him smaller feed more frequently and increased gradually.

Our diagnosis was only confirmed after we used the elimination diet. I cut out all dairy, soya, wheat, egg. Within 2 weeks we saw a significant improvement, and by week 6 all his symptoms were gone. I think if she was drinking SMA in such volumes, I would be extremely surprised if it was CMPA. Are you able to go private to see a gastro specialist?

Sorry I meant to say at the very least continue to harass GP for Neocate to try, but prepare for it to take a few weeks to adjust to it. Dark green poop is perfectly normal with Neocate, just so you aren't alarmed!

Sorry I doubt this is helpful but I thought I'd add, I don't have a colicky baby but the reformulated Aptamil has "postbiotics" in it from a fermented milk blend and it made my DS's poo so runny I had to mix it with other formula. He had proper yellow breastfeedy type poos on it so wondering if it will help? If it's not CMPA that is, as it definitely has dairy.

I know it’s so strange. The doctor had her on movicol but then wouldn’t prescribe anymore saying she should regulate her vowels we had a couple days of constipation and it’s been pretty regular since. She seems to get stomach aches no matter the milk and she refuses any milk. I tried her a few weeks ago with hipp organic comfort and she didn’t seem any different although she did take more feeds. I don’t know what it could be. Today she’s had 455ml milk between bottles and solids and she’s had her normal naps as usual. How long after having milk did your baby react? She seems to get very gassy anyway even on nutramigen and sometimes seems in pain but that’s usually caused by huge burps. She’s still needing to be winded and we sometimes have to use infacol which I’ve started using before bottles and seen an improvement. I don’t know if I can put any of this down to CMPA to be honest and the doctor won’t refer me anywhere and it’s difficult now with everything going on to change doctors or even get a referral. I assumed CMPA would be more intense symptoms. She was refusing feeds a lot then would only have them lying down then only in bouncer then only upstairs and then she was fussy with them. Two teeth popped through she started crawling. Pulling herself up and still she’s refusing feeds or having 3oz maybe 2 then I have to leave her for a few mins and go back and see if she will finish bottle sometime s she will sometimes not. I really just don’t know she had hard poops never mucus and never green or anything. She’s vomited a few times on nutramigen but never before this. I’m honestly at a loss.

To be honest because my partner thought she didn’t like taste we tried vanilla etc and health visitor said try a bit of crusha syrup which didn’t help so he bought hipp organic for constipation. It’s still slightly hydrolized and has lower lactose levels and she’s had it since around this time yesterday and I haven’t noticed any signs or symptoms. Would this have been apparent by now? I’m trying everything.

You're totally right regarding the taste. We were told get him on it by 4/5 months as they are less likely to reject it. I will see if I can find a list of the other things that were recommended to add to it.

DS reactions usually happen anything up to 24hrs later. There's no mistaking it. He goes from happy and bouncy to extremely whiney, the poop becomes very smelly and again, mucous filled. It's like he has a personality transplant. Very different to the fussing when he is teething or development leaps, but what you are describing does sound familiar there too. It's hard isn't it when there is so much going on at once.

I know you're trying everything but definitely give each new milk at least 8 weeks to kick in. I know it sounds like a long time but whatever they were having before needs to fully clear out and they need time to adjust to the new stuff. You should see improvements gradually after 7-10 days or so though.

I'm wondering if perhaps a touch of silent reflux? Maybe try a few days of keeping her entirely upright for 20-30 mins after each feed. It's a pain in the arse but feeding laying down is said to aggravate it.

Infacol needs to be used consistently with every feed to be effective. We saw no difference, but if it works for you keep at it. Which bottles are you using?

On what grounds is GP refusing a referral?
I do feel for you. It is very difficult to get help when there are so many question marks and babies often grow out of these things. As many MNtters before me have said "This too shall pass".

One of mine had silent reflux and the gassy burps, crying/screaming in her sleep even at 9 months is familiar. She had the most acidic urine ever and every tooth was torture as it made her symptoms worse.

Yeah so she’s been on cows milk formula now for around 29 hours. Seems fine drinking a bit more not stopping after 1oz and she will have some bottles on me & she’s had a good BM. I did have to give suppository though as it was bothering her but she’s more accepting of bottles today so I’m going to monitor her and if everything’s okay it can’t be CMPA the doctor said she doesn’t have CMPA and she shouldn’t have refereed to Pediatrician in the first place. She’s a nightmare the doctor she doesn’t listen to anything. Said she doesn’t believe in reflux?? So yeah it’s hard.

She doesn't believe in reflux???? 🤣🤣🤣🤣🤣
What nonsense!

Until you can get her to take you seriously/see someone else at the practice perhaps look into natural remedies for silent reflux & speak to the pharmacy to see if there is anything they can give you OTC for a baby as young as yours.

Good luck!

I know she’s awful isn’t she. I was planning on changing her doctors but I changed her at 4 weeks because our old doctor was telling me to give her pure orange once w day for her constipation so I thought i best swap. And now I’ve got her I don’t know what’s worse haha. She’s been a bit better yesterday. She’s okay with solids so I’m focusing on that and trying her with her milk in all different ways and I’m managing to get enough into her. Today morning bottle she usually has 3oz she had just over 2oz so I’ll have to try again in a little while.

My son was trailed on a number of formulas and finally settled on Neocate. There's a reluctance to prescribe it because it's very expensive however the GP felt it was worth it and was happy to continue with the prescription until he was 12 months old. The improvement was immediate and incredible.

If you feel that there is too much CMP in Nutrimigen and your baby is still reacting adversely the do push for Neocate.

Thanks for that. I don’t think it’s CMPA to be honest just fussy. There’s hardly any symptoms