Prem baby struggling since switching formula

[Flower20166]

Baby was born 9 weeks premature. In the hospital he was on sma pre term milk and was fine and settled.
He left the hospital at 3 weeks (almost 35weeks gestation) and the hospital said he no longer needed the pre term milk and so I put him on sma pro 1.
Well since the night he got discharged and the day his formula changed he's been super fussy and a bit refluxy.
When I spoke to the doctor she said she didn't want to put him back on the pre term milk as it was a step back and so instead she prescribed gaviscon, and a week or so later prescribed ranitidine. The gaviscon is helping keep his feeds down but I don't feel the ranitidine is helping (only been on it a week though).
He's super grunty/Groany and wriggly after feeds and will sometimes arch his back. He also makes a noise like he's trying to clear his throat at times.

I'm wondering IS it possible for him to go back on the pre term milk? Or would cow and gate comfort provide him some relief?
I am going to speak to the HV again tomorrow but thought I would see if anyone here had any insight! Thanks X

[Flower20166]

I should add that baby has been out of hospital for almost 3 weeks now, and I can't bear to keep seeing him in such discomfort.

[Tickey]

Hi

I was in a similar position.

I was discharged with extra calories to add to milk (breast milk) the hospital then refused to provide it 1 week after discharge and left me without (without discussion) I used cow and gate for a week to top up my supply and he had all the problems you describe. I ended up topping up with cow and gate comfort and although he had slightly less tummy ache I found it made him smell permanently (of rotten eggs!) and he just pooed constantly.

Unfortunately we ended up readmitted for serious illness but to a different hospital in a different district. (Not anything milk related) They had funding and therefore referred us to a dietician as standard. I would push for a referral to a dietician as I 100% believe they don't like discharging babies on prescription formula purely on a cost basis. My little 1is on Infitrini now and despite the fact he has caught up with his weight they've decided to keep him on it so that the problems you describe don't occur.

It's so frustrating when babies make fab progress and then go backwards due to avoidable allergies and intolerances. Have you got a follow up consultant appointment soon? If not I'd just keep going to the gp. We had a prescription for lactulose but that just made things worse as he ended up with a constant gripey tummy (and appeared more painful than constipation)

Hope that helps.

[Tickey]

P.s pre term milk is NOT a step back. Consultants sometimes view it as a developmental milestone and it isn't. It's food! My consultant said at the last appointment "it's nothing special, it's just a few extra calories and if it works for him lets not upset the apple cart now" a step back is a baby who is suddenly not tolerating feeds and potentially losing weight as a result. Definitely push for a dietician.

[Flower20166]

Thanks for your reply!
What do you think could be the difference between the pre term formula and the normal formula that would upset him? Does the pre term have less lactose or something?
It's so hard to know what to do for the best isn't it! HV advised trying the comfort milk to see if it is gentler on his stomach and said if not to go back to the doc. He's been on it since yday and I haven't noticed a changed apart from him getting more sick (stopped the gaviscon whilst giving it, but to be honest he has been getting sick on the gaviscon the last week or so!!)

[B1rdinthebush]

So is it your GP who is refusing to prescribe the pre-term milk? My twins were born at 30 weeks and discharged on Nutriprem 2. My GP was happy to prescribe is as long as I needed it (thankfully). We came off it at around 6 weeks after their 40 week due date following our 6 week neonatal check-up. It took them a little while to get used to normal first milk but they got there eventually.

Do you have a neonatal outreach team you can speak to? Or a contact for one one the consultant neonatologists? In my experience GPs are not always best placed to make decisions regarding prem babies as they simply don't have the breadth of training (as you would expect). I was lucky as my GP very much took the lead from our neonatology team but it sounds like you're not getting this same support. I would push for some help from the hospital if possible.

[Tickey]

Hi

I'm not sure if they're different in relation to lactose or not. I kind of had the opinion that they were all the same until I had my little 1 and I assumed he'd be fine with cow and gate as that was the same brand as the supplement. I was totally wrong!

I think it might be related to the way they are processed (I'm guessing) but my little boy tolerated the pre made milk, in the bottles that you pour in, but not the powder. My brothers (not prem) baby tolerated the pre made milk better also, so might be worth a try. I was lucky as Infitrini is pre-made bottles and he's been absolutely fine with that.

I do have a friend who was discharged just before me who had the same problem as you, where her little boy tolerated the milk in hospital and then after a few weeks at home started with reflux. I wonder if it's related to when they start to move around a lot more? And being held more and passed around? However if your milk was changed it seems more like it'd be related to that.

If it's bad reflux and is resulting in weight loss I'd definitely request a dietician especially if your gp is being rubbish and has little experience with prem babies. X

[Tickey]

Also, I'll add (I'm now being very cynical) but both my gp surgery and pharmacist have both expressed a negative opinion about prescribed milk, as its expensive and they claim they don't get the full cost back.

Why I need to know about the cost I'm not sure, it's not like I'm going to say "oh okay then I won't give my baby what he needs to support your budgets" dieticians don't get wound up with budgets in the same way so you're more likely to get what you need.

They also refuse to give me large quantities at a time so I'm constantly trailing to the pharmacy, I think they hope I'll be put off or something. Sorry I'm ranting now but my point is if you need it fight for it. X