Where can I get Nutramigen at a reasonable cost?

[lifesjoys]

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]

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]

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

[MadamePomfrey]

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]

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]

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]

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

[lifesjoys]

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]

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

[WhatInTheWorldIsGoingOn]

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]

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]

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]

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]

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]

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.

[lifesjoys]

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]

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

[Passmethecrisps]

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

[JoWithABow]

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

[lifesjoys]

I feel like the worst person in the world giving my son milk I know gives him stomach ache :( 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]

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]

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]

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

[lifesjoys]

Oh I didn't think of that!

Il have a word with my HV.

I had to have more tins prescribed as the doctor only did two!! I told her that on normal formula, my DS was going through 900g a week! 800g wouldn't last.

They then prescribed another 2, so he'd last until start of June until I saw the doc again. I advised that would only take him up until end of May.

So I've now got another 2 prescribed & ordered 2 from amazon just in case we run out before I can get more.

It seems to be working!

He had 4oz at 20:30 yesterday, he then slept 5 hours!! He hasn't ever gone that long before.

I fed him at 01:30 this morning when he woke me, he only had 3oz, so I assumed he'd be up in an hour crying for more.....nope, he slept the 3 hours!!

Obviously he's only had 4 feeds so far so has still got diarrhoea & really bad smelling wind but I hope this means it'll start settling down!!

Fingers crossed