Nutramigen - suddenly back to square one?!

[Whoopsadoo]

Hello,

DS is 10 weeks old. GP has kindly prescribed Nutramigen whilst we wait for a referral to a dietician after HV suspected cows milk intolerance.
Symptoms are:

• Constipation/diarrhoea - fully formed solid stools, explosive nappy on other occasions. 1 dirty nappy a week, 2 at most.
  
• Lots of flatuence, foul smelling and loud (DS screams each time)
  
• Coughing/Sneezing
  
• Lots of regurgitation when feeding and continuing in between feeds.
  
• Back arching when trying to burp, lots of pained crying.
  
• Generally unsettled, barely sleeping except for cat naps usually disturbed by regurgitation/trumping!
  
• Dry skin.
  

We tried all the advice for reflux, sitting him up after feeds, crib on an angle etc

The Nutramigen seemed to work beautifully initially, DS was content, feeds were significantly easier, no sickness in between feeds and he was having two normal dirty nappies a day.

A week later we have come back to a very unsettled baby with most of the previous symptoms. We also use Gaviscon with his feeds which we have been advised to use every other feed, but feeding is much much worse without it.

Would appreciate any advice. I'm wondering whether this is CMPI at all, or reflux, or both, or neither? I am very pleased for the referral but have been told to expect the appointment to take some time to arrive. I know we will need to just wait it out for now but it's so hard to see him like this

[Tatiebee]

They do sound like the CMPI symptoms my oldest child had. Is the Nutramigen the dairy free one?

[Whoopsadoo]

He's on Nutramigen 1, which to my understanding has the cows milk very broken down?

[Onthedowns]

We have a son the same, 14 weeks tried nutramigen helped for 2 weeks now we are on neocate. It has helped tummy issues but not so much his reflux. He's on gaviscon ranitidine and now moving to omprezole. He's terrible sleeper hates his back crib raised or not ! 😴 It sounds like it's both with yours too. You might need medication which gp can prescribe. Neocate is completely milk free

[fluffikins]

I think neocate is the only truly dairy free one so I'd change

[Whoopsadoo]

Did you have to wait for a dietician to prescribe neocate? I have been told a dietician will need to diagnose the intolerance/allergy before any milk can be prescribed long term. DS is no longer constipated and now 'goes' daily for the first time in his life without screaming, but everything else has returned. He continues to be incredibly windy (in both burps and trumps!) despite winding regularly, baby massage and anti colic bottles.

[3boys3dogshelp]

GP can prescribe Neocate if they want to, but they try Nutramigen first as it's much cheaper. If you have a wait to see the dietician I would strongly recommend going back to the GP and requesting Neocate. Nutramigen is hydrolysed cows milk protein, for a lot of CMPI infants the proteins are not broken down small enough and they still react.

[Onthedowns]

There's also purafimo milk to which is milk protein free, we were told no definitive Test for allergy/ intolerance this age although we had a stool sample done which showed inflammation. I would go back like other poster said try get GP to prescribe prior to wait

[Notsosmartagain]

Exact thing happened me with my son at the start, he was moved on to Nutramigen AA and was great from then on in. Go back to your GP and ask them if they will prescribe the AA or Neocate.

[Whoopsadoo]

Have been back to the GP, they've doubled the gaviscon dose?! Dread every feed, sick everywhere and lots of screaming without fail until I finally give in and cry myself, trying to console DS with a dummy and a cuddle. Eventually he will go to sleep on me, will be sick a few times before next feed and then we will start again :(.

What on earth do I do now?! Has anyone tried cranial osteopathy? Seen a private dietician?

[user1467273391]

Hi

There's a charity called allergy uk (www.allergyuk.org). They have a helpline you can phone. Last year I phoned them about my daughter, they set up a phone appointment with a registered dietician (I think it took a week or two but I got the appointment quicker than I did from GP). After the phone call the dietician will send any recommendations to your doctor. I would still keep your other dieticians appointment, it's just a route to speaking to a dietician sooner.

[fraggle84]

I'd ring the gp secretary and chase up the referral. They normally see cmpi patients within a week, I'd also ask for neocate as it is the only one to contain no dairy at all.

You can buy neocate but it's about £50 for 400g tin so you'd spend about £100 a week I'd definitely chase up the appointments

Re reflux we were changed from gaviscon to onepramzole which really helped.

With ds we had a hard time getting heard by GP so as soon as dd showed the sam symptoms I took her to a paedetric a&e. She was losing weight and I wasn't prepared to go through what we did with ds.

Is that an option?

[NeedACleverNN]

You can get nutramigen puramino forumula which is milk free

Nutramigen lipil 1 still has cows milk

[Whoopsadoo]

To update we saw a dietician privately who recommended Neocate. We are also on ranitidine for reflux. Neither have helped!

DS is more settled in terms of nappies and wind though.

[Grassgreendashhabi]

It could be dairy allergy.

My niece went onto soya milk under doctor after trying nutrimigen for a few weeks

Nutrimigen helped but symptoms reappeared

Doctor changed to soya and it made a huge improvement

Zero dairy

[Mummy2lilC]

I'm having the same problem. Been on nutramigen a month and symptoms have reappeared. I understand how frustrating it is :( we have been given carobel a milk thickner to help with the reflux haven't tried yet. Want to try it before other reflux meds. Perhaps try that as neocate is so watery. X