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Where can I get Nutramigen at a reasonable cost?

(45 Posts)
lifesjoys Sun 14-May-17 22:45:34

Changing my DS's formula, he had blood in his stool today, straight to hospital and it's CMPA, at the rate he eats il need 2 400g tins a week.

Any suggestions on where to buy it??

JoWithABow Sun 14-May-17 23:05:54

Can you not get it prescribed? If not then any chemist. I think formula is always the same price whereever you buy it as it's not allowed to be on special offer or discounted.
Hope your boy does better on it and is happier. CMPA is horrible but once you've worked out the milk that works for them it's a big relief

AirandMungBeans Sun 14-May-17 23:09:12

We used to get it on prescription, 12 tubs at a time. Have you tried asking the GP?

MadamePomfrey Sun 14-May-17 23:11:37

Are you in the U.K.?? It's be available on prescription here. It's expensive so gps are very reluctant to do it but if you have been seen and diagnosed at hospital then they would struggle to argue with you

CrispyBathTowel Sun 14-May-17 23:11:38

I don't think you can buy it - it's prescription only. If it's CMPA confirmed by the hospital will your GP not give you a prescription?

Passmethecrisps Sun 14-May-17 23:12:22

It should be prescribed. Hospital gave us two tins to start with after diagnosis then a letter for prescription from the GP.

Good luck

Miz10 Sun 14-May-17 23:32:06

You can buy it but it's about £25 a tin. Most people get it on prescription though,

lifesjoys Mon 15-May-17 00:04:42

My gp is rubbish, she thinks it's in my head!

The only issue with hospital is that they've also thrown "possible bug" into the mix, so I expect the gp to want to see symptoms for a few weeks before they even consider diagnosing & then prescribing.

I've looked on amazon & ive found a seller selling it for £11.50 a tin, it'll be double what I spend now.

I'm considering telling gp that I've decided to become vegan & that I'd like my DS to be too, he'll need a non dairy formula then

JoWithABow Mon 15-May-17 07:04:24

I don't think think vegans get free formula do they? You'd have to buy it if that was the case

WhatInTheWorldIsGoingOn Mon 15-May-17 07:10:51

I'm sure being a vegan is a choice that won't be funded by the NHS.

You are just going to have to push and push and not stop. Call a meeting with the practice manager. Explain that your doctor is refusing to believe a mother and confirmed medical diagnosis. Explain that this is having a huge effect on your family life and therefore eventual mental health. Do not take no for an answer.

NorthernLurker Mon 15-May-17 07:14:10

Hang on though, you don't have a diagnosis from a paediatric clinic do you? Or support from a dietician? It sounds like you've gone through an emergency route and been told it could be CMPA or it could be something else and you've picked the option you were already tending towards?
I think you need to try and work with your gp because changing formula is a big decision and you will need their support.

Emma2803 Mon 15-May-17 07:24:51

Has your son had previous history of problems such as vomiting, reflux, diarrhoea or constipation and severe wind etc? Other signs can include skin reactions and breathing issues associated with feeding times.
Did the hospital do any tests to diagnose cmpa?
If I was you and your son has been exhibiting these signs for a prolonged period of time (ie shortly after birth) I would be demanding an urgent referral to a paediatric dietitian.
Don't bother saying you are a vegan, that is a lifestyle choice and totally your decision, no way they will prescribe for that.
Also there are three nutramigen formulas available, make sure you are getting the right one. Did the hospital tell you which one to get,give you any or give you a letter for your Dr?
If they gave a letter I think the gp would have to go with that. They would usually try the milk for a few weeks then reintroduce the old milk to see if the same problems come back and if so continue on with the cmpa formula.
Good luck! I hope you get your wee boy sorted out!

Soubriquet Mon 15-May-17 07:25:08

You need to get it prescribed. See another GP if you must

I had it prescribed. Nutramigen lipil 1 to begin with and then puramino (fully dairy free and cows protein milk free) later on when lipil 1 wasn't working.

We did end up with him in hospital for a night before we got the puramino though because he refused to eat down 24 hours. Nothing was going in his mouth. That's when the hospital gave him the puramino and he was a changed baby

user1490649478 Mon 15-May-17 07:28:28

Nutramigen is truly truly foul tasting stuff. My LO wouldn't go near it, even when I put maple syrup / honey in to try and hide the taste.

How old is your LO? I'm guessing if he's getting through that much formula he's nearing weaning age. In which case he may point blank refuse it if he's been used to normal formula.

Has LO had other symptoms? Vomiting, eczema? If so explain these to your doctor. We were lucky ours always been really supportive.

iluvgin Mon 15-May-17 07:29:22

Why would you lie to your doctor? That certainly isn't the way to get your son diagnosed.
Bloody stools is one of the common symptoms of cmpa so if you see your gp again it may well be that they will reconsider the diagnosis.
You then need referring to a dietician who will be able to advise with weaning etc when the time comes.

MiaowTheCat Mon 15-May-17 07:30:26

OK so you've got a twat of a GP. I've fought this battle and won (over neocate - with a GP known for making it so shit patients would leave the practice instead of getting their prescriptions).

Our HV was fantastic - in our area the HV do the referrals to the dietician team. Dietician team had DD2 on a 4 week trial (which the GP pissed and whined about no end but had to honour when the HV pressed her on it). GP then lied to the dietician and accused me of lying to defraud the NHS to avoid paying for formula.

By this point I'd got hold of the infant formula prescribing guidelines for our NHS trust, written by the dietician that we were seeing - and started quoting lines of them back at the GP. Backed up by the HV and dietician and the GP had to give in and stop halving the prescriptions arbitrarily and making me go down and beg for one tin at a time.

Basically - get the prescribing guidelines and talk to your HV. Get photographs of bloody nappies and also anything like the post-feed screaming fits DD2 used to have and the rashes she used to come up in.

Asking for the complaints proceedure at the GP surgery is often a nice little tool to speed them up as well. I'm one of the few to have beaten our GP on this one - the dietician told me they'd had endless problems with this practice and most patients had jumped ship to the other practice in our town when in this situation so they needed some like us to knock her into touch - but it was a horrible battle to fight and made me quite distressed at times. Our HV was awesome though - at several points she staged sit ins in the GP waiting room to get the doc to do prescriptions for me.

lifesjoys Mon 15-May-17 12:59:14

His symptoms are:

Rash on face & chest
Diarrhoea with blood in his stool
Screaming
He's been on gaviscon for reflux
He's got colic
His wind/stool are offensive (smell)
He suffers terribly with wind
He cries during feeds, pulls off the bottle & drinks again, he does this most feeds

He also is only 7 weeks today, still 10 weeks until he can be weaned at the earliest (if HV/gp, says he could be).

Or 19 weeks for the recommended age.

I rang my surgery today, they arranged for a call back, luckily the hospital had sent a letter so the gp was able to read it before talking with me, the conversation went a lot smoother than I expected.

We are doing a trial on Nutramigen!

Going to pick it up later.

Emma2803 Mon 15-May-17 13:30:05

Oh that's great op!! Your poor wee boy!! Hopefully this will help him!!

Passmethecrisps Mon 15-May-17 13:43:02

Glad it went your way, op. My dd had CMPI rather than CMPA but nutramigen was a total game changer

JoWithABow Mon 15-May-17 14:43:56

Just wanted to say well done for finding out what the cause of it was and for getting it sorted, I'm sure the past 7 weeks must have been hell for you at times so you have my admiration. I hope the new formula works quickly and your lovely boy is happier on it. If it is CMPA he'll be like a different baby. I know it can be daunting having to learn about it all but you'll get through it flowers

lifesjoys Mon 15-May-17 22:53:05

I feel like the worst person in the world giving my son milk I know gives him stomach ache sad the pharmacy took the prescription & said they'd get it in for the morning.

Called after most pharmacies shut, to tell me the supplier was out of stock!
Can't get it until Monday.

I'm ringing every pharmacy in my area tomorrow probably up to 30 miles if I have to, he needs to come off.

This formula is going straight through him, the rash is getting worse & he hasn't slept in hours, I can't get him to settle.

Emma2803 Mon 15-May-17 23:10:28

Oh don't feel bad it's not your fault and really no way you could have known. Hopefully you will be able go get it at another pharmacy, it is a common enough formula. I'm not sure if there are any supply issues with it. If you are stuck you could contact the hospital to see if they can give you any.
If you can't get it there are other formulas for cmpa available, neocate, aptamil pepti, similac alimentum. See if the gp will change the prescription to one of these brands

JoWithABow Tue 16-May-17 04:51:29

ive seen people post on local Facebook groups before asking to borrow tins of formula (e.g. If they run out unexpectedly) - maybe try posting there and see if anyone will lend you a tin until you get yours. Sometimes posts like that get deleted as not really supposed to do that with prescription items but someone might see if before it gets deleted. Or maybe post on here what county you live in & perhaps someone can help.
I do think often pharmacies order stuff like that in as and when they get a request, keeping my fingers crossed you get it soon

lifesjoys Tue 16-May-17 11:31:05

Good news, a pharmacy not far from me has over 20 tins in stock!

Going to get it now, I've also managed to order 2 x tins to tie him over in case I can't get the new prescription so I'm not forced to give him his normal formula again.

I will see if I know anyone who has a child on the same formula

MiaowTheCat Tue 16-May-17 14:20:55

Our HV had a word with the local pharmacy and told them there was likely to be a child on neocate for a year so could they look at keeping a couple more tins in stock than they tended to. With how they tend to do the prescriptions though if you get it on a rolling one they used to give us 12 at a time or something - so the pharmacy always had to order it in with an extra day's delay. Oh and if that happens - don't plan on picking it up on foot as you end up with a massive box to lug home (or you're hiding single cans rammed absolutely everywhere on the pushchair)!

There's also an allergy, intolerances and coeliac forum on here that's really helpful.

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