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Allergies and intolerances

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Original poster

Neocate Advanced - any experiences?

22 replies

ilovemydogandMrObama · 22/04/2009 14:53

DS (13 months) has been on Nutramigen, but seems to be intolerant to it.

His consultant and Dietician have recommended Neocate.

Any experiences? he has severe intolerance to cow milk protein...

OP posts:
Sunshinemummy · 22/04/2009 15:09

ILMDAMO DD is on Nutramigen and thankfully is ok with it but when we saw the pead she explained that Neocate is a more broken down version of the protein that your DS and my DD are intolerant to. I think it's actually broken down into individual blocks. The paed said it tastes of nothing but I don't know anyone who's using it.

trixymalixy · 22/04/2009 15:15

My DS was allergic to Nutramigen as well, wo we were prescribed Neocate.

DS wouldn't touch it so we were advised to mix it with Nesquick and gradually reduce the amount of nesquick until it was all formula or to mix it with breastmilk and gradually reduce that.

Original poster
ilovemydogandMrObama · 22/04/2009 16:53

Thanks. Is it normal to have sachets? GP prescribed 100 ml sachet....

(the pharmacist just ordered it, so we don't have it yet)

OP posts:
laura3737 · 22/04/2009 19:32

My son also is highly allergic to cows milk and was put on Neocate at 6 months when I gave up breastfeeding. He hated it but after a few stressful weeks he started to take it!!! And after a lot of perseverance he got used to it. Now 16 months later he still loves it.

Good luck

trixymalixy · 22/04/2009 19:49

It sounds like it's Neocate advance that they have given you which comes in sachets rather than a tin.

It is for children over 1. You can get it in different flavours so it might be a bit more palatable.

Original poster
ilovemydogandMrObama · 23/04/2009 13:19

well, DS seems to have taken it OK. It's quite inoffensive.

Did you make it up sachet by sachet?

But what to do with all the cans of Nutramigen? They are sealed, and the pharmacist said they couldn't be reused, and she'd have to throw it away! Seems such a waste of NHS resources...

OP posts:
trixymalixy · 23/04/2009 13:31

I tried to offer tins of Neocate on here, but there was no interest.

I was going to sell them on ebay and give the proceeds straight to charity.

It is an appalling waste that the pharmacists have to throw away unused, unopened tins.

yes, just make it up sachet by sachet.

Original poster
ilovemydogandMrObama · 23/04/2009 13:39

Thanks Trixy. Glad that someone else shares my viewpoint! The pharmacist didn't seem to understand why I cared, as she said that it wasn't if I was being charged for them!

Guess anyone who needed Nutramigen/Neocate would have it prescribed?

Not sure if you know about Oatly cream? Just got the local health food store to order it and it's really quite palatable.

OP posts:
Sunshinemummy · 23/04/2009 13:42

I'll have your Nutramigen if it's going spare.

What's Oatly cream?

trixymalixy · 23/04/2009 14:16

But we do pay for it through our NI and taxes!! It's a real shame people have that attitude where if they're not being directly charged for something then it's fine to waste it.

I've seen lots of posts on here with people not being able to get their GP to prescribe without seeing a specialist first so I was surprised that no-one wanted my neocate.

I'm a big fan of oatly cream. I have made lovely ice-cream with it and potato gratin.

trixymalixy · 23/04/2009 14:22

Sunshinemummy it's oat based cream. I get it in my local Tescos.

It's nicer than soya cream, plus it's good if you're allergic to soya like my DS.

simpson · 23/04/2009 14:22

My DD (14mths) has been on neocate (the tinned one, not sachets) since she was 10mths old for severe dairy/soy intolerance.

Had no problems getting her to take it and she loves it Odd child!!

Original poster
ilovemydogandMrObama · 23/04/2009 14:28

Sunshine mummy - it's yours. Are you OK to pay postage? email me on: [email protected]

Wonder if it has to do with not being able to take baby food back? DP once got a can of Hipps organic and got the wrong age. DS was 6 months and he got a jar for a 10 month old. Wasn't able to take it back and was told that they aren't allowed to take back any baby foods...

Any idea why we got the sachets rather than the tins?

OP posts:
trixymalixy · 23/04/2009 14:39

It counts as medicine because it's on prescription so has to be destroyed.

I don't think the advance stuff comes in tins, because it's for older children you might not get through a whole tin before it goes off, so it's less wasteful if it comes in sachets.

misscutandstick · 23/04/2009 18:12

I DID NOT GET NEOCATE 'JUST PRESCRIBED' IF ONLY IT WAS THAT EASY!!!!

My baby had severe intolerance too, i begged whined and complained, and even asked nicely - NO-ONE would prescribe! the dietician claimed she couldnt as he had a paed, the GP wouldnt for the same reason, and the Paed wouldnt as his intolerance didnt show up on a blood test... DS5 has been on ricemilk since 10mths. His weight only went into double figures when he was a year old because of violent sickness and diarrhea caused by intolerance to: gluten/wheat, egg, soya, dairy, and a couple of other things.

Please do not just dipose of your milk, there are lots of babies who need it - its just finding them.

I had to get duocal imported from america, as the paed wouldnt prescribe that either and advised me to get a 'private prescription' from someone else!

Original poster
ilovemydogandMrObama · 23/04/2009 19:24

Miss Cut - Did you know that a dairy intolerance won't actually show up if there hasn't been any dairy in the system? DS results came back the same - negative for lactose intolerance. I reminded the consultant that he had been nil by mouth for at least 24 hours and no dairy for at least 48. But they still thought it was a cow milk intolerance based on other factors.

Am really surprised they didn't put a failure to thrive on your DS. At the Children's Hospital where DS is a frequent flyer, the consultants defer to the dieticians. DS had to wait to get his GS tube and drip out until he had seen the dietician.

Sorry if you were offended by my comment. All I meant was that if a baby needed Nutramigen/Neocate, then I would assume they would be able to get it on prescription. Thanks for putting me straight on this and that there are doctors who are reluctant to prescribe these formulas.

(I'll give you DS Paediatrician's email...)

OP posts:
simpson · 23/04/2009 19:27

Miss cutandstick - similar story here

In the end only got neocate prescribed because I got a free sample from someone on MN and the pead couldn't argue against it anymore because the difference in DD straight away was incredible...

misscutandstick · 23/04/2009 21:11

love my dog - im really sorry to have ranted so loudly, its not your fault at all, but it just gets me so annoyed, the whole sordid ordeal, and I know that its not just me, its many others out there too.

And i really think that the vast majority of the prob is down to finance because each practice/clinic only has a certain budget and it IS very expensive. Pity it comes down to who is worth it , i rather suspect that if it were their baby the price wouldnt even be a consideration.

...

DS5 went for his blood tests at a time when he had just about removed milk from his diet (just the hidden stuff left) and i had suspected that gluten was having an effect on him too and had cut that down - his poo was horrific after pasta.

I did explain at the time to the Paed that he had very little of the stuff in him because it was making him so ill i wasnt prepared to make him more ill for a few weeks just to get levels up (between violent V&D, self harm, his grey colour, swolen tummy etc) and he said that it didnt matter

Sunshinemummy · 24/04/2009 10:51

misscutandstick similar story for me, although luckily DD isn't quite as intolerant. The GP kept asking me to try her on different formula despite the fact it made her violently sick. I felt like I was wasting their time, until I talked to another mother at nursery who's daughter was on Nutramigen. She told me she'd had to fight for it, so I took DD to the GP and refused to leave until he agreed we could have her tested. He called the local hospital to discuss with the paed dietician and they told him it sounded like an intolerance and asked him to try her on Nutramigen - she's been fine ever since.

ilmdamo I've e-mailed you.

serenbeca · 07/05/2009 19:07

my 17 month old daughter was started on lactose free diet after 8 months of awful diaorrhea etc. I saw the GP who referred her to Paediatrician and the did blood sample stool sample and got a dietician involved she gave us neocate ( which our babay wont touch!!!) and enfamil which she loves but is for smaller babies so not really nutritionally suitable we were told they arrange scripts thru the GP???? still really new at all this so would be grateful for advice will try adding nesquick she has never had a milk shake!!!

simpson · 07/05/2009 21:45

Serenbeca - have you got the tin of neocate or the sachets?

The sachets might be more palatable and come in black current flavour I think...

or mix neocate and nesquik or crusha then gradually reduce amount and up the neocate iyswim

Good luck!!

sarahandmam · 26/05/2010 11:37

hi
my daughter is 17 months now shehave soy and weat and dairy and egg free diet couse of eczema since she was 2 months i was breast feeding her she was one year i was on the same diet my self after i stoped breast feeding she wouldnt have any milk we tried neocate then cowandgate pepti then neocate advanced she wouldnt drink any of them she stayed without any milk for 4 months she only had food respecting her diet and just 3 weeks ago she finally started to drink neocate advanced but only with cold mineral water its banana vanilla flavour and after a month of taking it now i have an other problem she doesnt like any food she only wants her milk all the time i am a bit worried about that plus they said there maby a problem with her legs she walks in a funny way maby its lake of calcium. iam sorry for making it long but thats my experience with neocate buy

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