Nutramigen - how long does it take to work? sorry for long winded post

[nowmum]

Hi

My DS2 (6 months old) was put on Nutramigen 2 for suspected CMPI (difficulty with bottles, generally fussy, eczema). At first the consultant thought it was reflux but after gaviscon and ranitidine did nothing he moved onto the CMPI theory.

Anyway its taken me 6 days to get DS2 onto full strength Nutramigen (had to mix with old formula slowly) and today is the first day of Nutramigen straight. I thought that as I upped the Nutramigen over the last few days I would start to see some improvement (even minor) but so far have there is no improvement and Id even say that he is a little worse this morning. He is consuming about 2/3 of the amount of formula he used to - once his initial hunger is satisfied he is just not willing to have any more! As a result he is not sleeping or napping very well.

The consultant told me that if Nutramigen didn't work that my DS2 would fall into the group of babies who have unexplained colic and we would just have to wait out the months!

In fairness I had this before with DS1 who was described by his lovely Grandfather as "the crankiest baby he had ever met". The Drs never thought of CMPI with DS1 and in the end we had to accept his crying/fussy behavior as part of his personality. Over time he improved and by age 2 he was pretty typical. However, I am fretting at the thought of another long road with DS2 (how am I so unlucky to have had not 1 but 2 difficult babies?).

Is there anyone out there who have tried nutramigen? I know I sound impatient but how long did it take to have an effect? Has anyone tried Nutramigen 1/2 and then moved onto Nutramigen AA or Neocate? Ive only learned about Nutramigen AA and Neocate here - consultant didn't mention it. I know its probably early days but its been such a long road so far and I hate to think we are running out of options to help him if nutramigen doesn't work!

Trying to stay hopeful!

[StuntNun]

We saw a temporary improvement for a couple of days when switching from normal formula to Pepti which I think is the same type of hydrolysed formula as Nutramigen 2 but then DS3's symptoms came back. As far as I know the advice is to try Nutramigen/Pepti initally but if it doesn't work within two weeks then you should try Nutramigen AA or Neocate. The problem is the cows milk protein is only partly broken down in Nutramigen 2 so some children will still react to it. Whereas AA and Neocate don't contain any cows milk protein at all. The reason for initally trying Nutramigen 2 is because it is cheaper than the AA formula.

Is your little one on solid food yet? If he has CMPI then it is more likely that he has other intolerances too. We needed to eliminate dairy, egg and soya from his diet.

Gaviscon and Ranitidine aren't the only meds to try either, we found that but Omeprazole is the business! We have been trying and stopping various things over the past few months to control his symptoms (clingy, cranky, abdominal pain and eczema) and he needs the Omeprazole or he wakes up in pain at night.

I've had a long journey with this myself, DS3 is 20 months now and I'm still not convinced he's entirely sorted with fish and wheat still under suspicion. On the plus side his six-month egg challenges seem to be showing a reduction in the reaction so I'm hoping he may be able to have some forms of egg by his second birthday. Like you I'm wondering whether my other kids had some problems too, certainly DS2 was a rubbish sleeper and he wouldn't drink formula or cows milk after he weaned off the breast at nine months which suggests he may have had CMPI as well.

[StuntNun]

This is a useful leaflet: www.cumbria.nhs.uk/ProfessionalZone/MedicinesManagement/Guidelines/Infant-formula-milk-prescribing-guidelines.pdf

[flingingmelon]

We had the same situation as you. I gave DS1 straight nutramigen and after about a day the difference was enormous.

Watch out for constipation though, sometimes the original tummy soreness / crankiness is now being caused by that. It improves and tricks like warm baths, teething medication and cooled boiled water help.

Good luck OP

[eragon]

depends on how much the gut is inflamed from previous formula. It can takes weeks to show total improvement.

[nowmum]

Thanks Stuntnun! So did your DS3 end up on Nutramigen AA or Neocate? My consultant seems to think that if gaviscon and ranitidine didn't work than its not reflux (or at leas primary reflux) and so Ompeprazole will not work? Did your DS3 show any improvements on ranitidine and gaviscon?
Thanks so much for the NHS leaflet as it will arm me when I go back to the consultant if I need to look for Neocate or Nutramigen AA. Its just so confusing!
Flingingthemelon - its nice to hear a good news story; maybe this time tomorrow Ill be singing its praises! He is having so little of it today I don't know if the crankiness could be hunger or the usual discomforts.

[StuntNun]

Nowmum he's on Neocate at the moment but we are discontinuing it on the advice of the dietitian (as he is over one year old) and switching him to Koko Original + Calcium coconut milk. His dietitian is really clued up, she is considering adding extra vitamins, I am following her advice on how to work out if he is intolerant of any fish, she has recommended holding off on cutting wheat as they may want to do a test for coeliac later, and she is advising me on food challenges and reintroduction of problematic foods.

With regard to the Omeprazole, I was lucky enough to have a GP who had a reflux child so he was happy enough to give the Omeprazole a try. Another GP recommended switching to Ranitidine and we had an immediate worsening of symptoms. Even missing a dose causes problems that night. Some children need both Ranitidine and Omeprazole for full relief of symptoms. The main purpose of Gaviscon is to prevent vomiting in refluxy babies so if your child isn't vomiting then it isn't needed.

[StuntNun]

Also your consultant doesn't seem to very well informed. It could be reflux or it could be CMPI or it could be both. Gaviscon is used to treat reflux; Ranitidine and Omeprazole are used to treat both reflux and CMPI. Realistically it's a suck it and see approach: try Ranitidine first, if that doesn't work try Omeprazole, some children need both to get full symptomatic relief. Pepti or Nutramigen 1 or 2 are the first formulas to try, if they don't work then AA or Neocate may be needed. This idea that some babies are just colicky isn't really acceptable, especially without trying all the possible treatments. And there can be damage to the gut that needs time to heal. My DS3 may be able to drop the Omeprazole eventually but just not at the moment.

[StuntNun]

I got the dietitian referral through my Health Visitor. Would that be an option for you?

[ShineSmile]

You need to keep going with the formula for a little longer.

Also, has your LO been weaned? If so, remove soya, egg, wheat and nuts from his diet. And then see if all that collectively makes a difference.

[ShineSmile]

It is very likely that he has other allergies apart from milk. Egg shouldn't really be given before 12 months to CMPA babies. And soya is very common, and wheat allergy is becoming very common too, and it is very easy to miss.

[Raeray]

I agree keep on with the new formula - if gut has been really affected by previous milk it will take more time - maybe even a couple of weeks to notice a big difference.
Practically - a drop or two of vanilla extract/essence can really help baby take more milk when they are switching over, as lots don't like the taste. Also recommend omeprazole - baby can have gaviscon, ranitidine and omeprazole all at once if required too.

Good luck, hope baby is feeling the benefits soon - it really is awful seeing them so uncomfortable isn't it?

[StuntNun]

Incidentally if you are starting weaning then a lot of the pre-prepared baby foods are suitable for children with intolerances. I still give some Organix products to DS3 even though he is 20 months such as fruit purees and snacks. I also keep a couple of toddler meals in stock for when my other two kids are demanding pizza.

[nowmum]

Stuntnun - Firstly thanks again for your replies you are a wealth on knowledge! I agree about the consultant as he did not mention Nutramigen AA/Neocate and I had to find it all out for myself. I actually live in Ireland so Im unfortunate not to have the good health system you have. I see the consultant privately at €100 a pop but I can easily enough swap to a different one if he isn't going to be more helpful. If I want to see a dietician I can arrange that at a cost to myself but of course I will spend whatever money I have to help DS2. At first the consultant thought we were dealing with straight forward reflux so advised to wean a little early at 5 months. Baby rice gave him nighttime cramps so stopped that. Otherwise its hard to see what foods he might be reacting to - you know when your baby is grumpy most of the time it becomes hard to decipher any differences in behavior but Im glad to hear that you've had good experiences with pre-prepared as lift with DS1 (age 3) can be busy enough so its handy to grab an ella's kitchen pouch if I need to

Eragon and Raeray - it makes sense that there is likely to be some damage/inflammation in his tummy if he has been intolerant so I need to be patient. Its hard to stay sane sometimes when you are dealing with an unhappy baba especially when relatives decide to give their opinions. DS1 was very fussy and I think some relatives are now thinking that DS2's fussiness is just behavior and a problem that I am causing. I can just imagine them saying "she's messed up again!". When DS1 was 5 months old I was told that I was "nurturing a crier" by an in law. In some ways opinions of relatives were more difficult to deal with than the crying of DS1 and certainly had a more damaging and long lasting effect on me. Lately, Ive been feeling that on top of current events I am dealing with the ghosts of the past but thats another thread completely

[nowmum]

Oh and Shinesmile - thanks for the heads up on other potential allergies. We are a vegetarian family but if DS3 can't have dairy/eggs/nuts he may have to be the only omnivore at our table! I think I will have to link in with a dietician.

[nowmum]

sorry DS2

[StuntNun]

Nowmum there are lots of Mumsnetters with experience of these issues so keep asking. Definitely press on with your own investigations as health professionals can be hit and miss on this subject. I wasn't well advised and it took until DS3 was 18 months before we got to the bottom of the problem. Even now I don't think my mum's convinced by the whole CMPI thing.

[RachelSingo]

Hi all
Sorry for long winded post....
Third time mum here and really struggling with this CMPA.
Ds diagnosed last week with this after a very rough few weeks. He is 13 weeks old and has always been a very fussy unsettled baby... tried two different milks and still always seemed to have tummy ache... so last week there was blood in his stools and we were referred to paediatrician. He was diagnosed with cmpa and given nutramigen milk. After a week in this he is very sicky with it and having dirty nappies three times more than he used to daily.... seem to feed him and it goes straight through.... am I hoping for a change in him too soon? Do I need to just persevere ? He takes the milk fine no problem but is still very upset with himself and as mentioned goes straight through him..... I just want my little mr to feel better.... any advice would be really appreciated