Milk allergy - neocate or nutramigen?

[beezneez]

We suspected DD (almost 9 months) had milk allergy so the GP referred us to a dietician and at the same time we decided independently to go to London to be assessed for the Leap study and get skin prick testing.

The allergy doctor at the Leap study appointment diagnosed DD with allergies to milk, egg and peanuts through skin prick testing, but she tested negative to soya and sesame. They said we should ask the GP to prescribe Nutramigen, but warned she probably wouldn't accept it as it tastes and smells awful, in which case we should put her on soya formula which tastes much nicer. They were also happy for us to give DD other soya products such as soya yogurt now (as there is no evidence that withholding soya helps to prevent soya allergy).

However the dietician we were referred to by the GP says we should not get Nutramigen, we should have Neocate, due to DD having multiple allergies. And we should avoid all soya products.

I'm now a bit confused about what I should ask for from the GP. I prefer the idea of Nutramigen as it's cow's milk based rather than amino acid based, so a bit more natural.

Sorry this is so long and rambling, but any advice? Does Neocate taste even worse than Nutramigen or is there not much difference?

I'm going back to work part time when DD is a year old, so I'm wondering if alternatively I can just keep bf-ing morning and evening and forget the idea of formula. (Although I never really envisaged extended bf-ing.)

TIA...

Dd started on nutramigen at about 6 months, and took to it no problem, although it does taste disgusting imo. We never tried neocate because nutramigen did the trick for us

Thanks Roskva. I think I'll ask the GP for Nutramigen - I think it's cheaper than Neocate anyway so they'll probably be happy to agree!

Did you combine Nutramigen with breastfeeding / ordinary formula at all or did you switch over 100% straight away?

thanks

Prior to nutramigen, dd was having ordinary formula (I wasn't able to bf ), but it took me ages to convince my hv and gp that dd was not just being sick, she was bringing up stomach acid - eventually the poor little mite had acid burn around her mouth because it got so bad . I switched her straight to nutramigen, and the acid stopped, just like that, after about 2 bottles. She didn't seem to mind the taste - presumably it made her tummy, and throat and mouth, less sore.

If your dd doesn't like the taste, you could try changing gradually, from what she has now, swapping an ounce a day for nutramigen, until she is used to the taste. I think babies have a different approach to taste to adults anyway, and if you persevere with the nutramigen, your dd will accept it.

My dd3 is on nutramigen no problems. We didn't get any for her until she was around 10 months old by which time I'd already gone back to work. It took me quite a while to get her to take it - I mixed it in with expressed milk gradually but at this age both my paediatrician and dietician were amazed she'd take it!

I've also been told to avoid soya milk but ok to have soya products occasionally.

She's going to be on Nutramigen until she's at least 2 so while other babies are off formula by this age we don't really have another option.

My son was described Neocate as he has multiple allergies. I used to think of his soya allergy as an extension of his sensitivity to peanuts (he reacts to any single bean although things have got considerably better over the years).

I have no experience of nutramigen, Neocate (the advanced one) now comes in 3 flavours, I have tasted it myself and although I woudn't have it as a milk shake the flavour was better than acceptable.

The downside is that is incredibly expensive (about £5 oer sachet I believe) which means many GPs are unwilling to prescribe it as it will "eat" a good part of their budget. My GP got into a right tantrum about it and took in his hands to challenge the decission of the allergician to put Neocate on DS's repeated prescription list. But then my Gp is an ar*e and to be honest even the hospital suggested filling a formal complaint against it.

...against him

ds2 has been on both, he accepted both with no problems

DS has just been put on Nutramigen for severe dairy allergy...

Do GPs hate prescribing it?

DD now 13mths and has been on neocate since she was around 10mths and took to it no problems...

Smells vile, so can just imagine the taste!! But DD doesn't seem to mind!!

Try Cow and Gate Pepti. This tastes pretty OK in comparison with the others. Its the only one my BF ds2 would accept. Also cheaper than the others, so this should please the GP.

Hi beezneez, I was wondering how your milk situation was resolved as I am in a similar position right now?? I have a 6 month old boy who is ? dairy intolerant and the gp is going to start him on nutramigen formula. I am breastfeeding and just started weaning but not sure if he is allergic to other stuff. I would happily bf morning and evening but he wants loads in the day too & was hoping to do a bf/formula mix. If anyone else can advise, would be great. cheers.

Bellazia I was actually told a breast milk/Nutramigen mix would be best. DD also took to Nutramigen straight away but we've now moved her onto soya milk and she loves that too.

If he is allergic to milk then i would go with neocate as it isn't cow's milk based. My ds was prescribed Nutramigen and quickly moved onto neocate as he was allergic to milk and couldn't digest nutramigen at all.

Hi my dd2 was on aptamil then wysoy then cow and gate soy then pepti then nutramigen and now finally nutramigen aa as shes cows milk protein allergic.
Nutramigen aa is vile,smells and tastes awful. dd1 took a sip the other day and cried! but dd2 has never had a problem with it and will happily guzzle it. Apparently it has something to do with giving it to them before their tastebuds develop properly. Otherwise you mix it with other milk until they take it.

For what it's worth Neocate is absolutely vile but dd still drank it and still does now (she is 21 months). I was bfing and gradually replacing an oz of pumped milk with Neocate until she was feeding 100% on it, her eczema even improved after that so she must have been reacting to something in my diet too.
I don't think it matters what you put your dd on as long as they can tolerate it.

my dairy allergic ds was allergic to nutramigen, i would go with the neocate as would save any difficulties if you did have to swap later.

Hi
My daughter is 5 months and has been on a dairy free diet for the last 2 months due to horrendous screaming on feeding, she is on cow and gate pepti/aptamil pepti (its the same). She really hasnt taken to this milk, but it doesnt taste too vile to me so maybe try this.

C has been drinking Cow & Gate Pepti for about 6 weeks but over the past week she has the new batch of Aptamil Pepti. She has been reacting to it and the reaction is getting more severe. Has anybody experieced this change betrween the Cow & Gate and Aptamil Pepti? Apparently they are the same but Cow & gate contains onky Milk whilst the Aptamil conatains milk and fish! Thanks.

Hello all, I have a child with Cows milk allergy who is two years and five months old. She is allergic to the protein and so can not tolerate any animals milk, soya, seeds or nuts. She has been on nutramigen formula since the age of six months when we first discovered her allergies. I first introduced it to her foods and offered it in a beaker before breast feeding, she didn't take to it for quite a while but we persevered and she takes it well now and continues to have a beaker morning and night. We are currently trying to get her onto oats milk and off the nutramigen. I also have a six month old baby who we believe has also got the cma protein allergy. We are waiting to see the allergy specialist. We have seen a dietician and they prescribed neonate formula. I am currently mixing this with her baby rice but she is still breast fed. I was just wondering which formula is best and what the advantages and disadvantages of each are? I think that both are as unpalatable as each other. My older child has done well on nutramigen and I'm wondering wether to change my younger child onto it. Any help/advise/knowledge would be very much appreciated. Thank you.

Hi my 20 week old was at the hospital this morning where the allergy clinic doctor confirmed that she has a dairy allergy. :( we always suspected this and I have cut out as much as I can dairy wise, I am breastfeeding.
We were prescribed nutramigen and I have given her 2 feeds half formula and half breast milk and she nailed it so here's hoping she takes to it.

It's great that people share their own experiences and I tips

(Oops my post giving away my unused Nutramigen tins was deleted!)

My daughter was also prescribed Nutramigen but its is super strength dairy free formula which tastes well, rancid (potato starch). My baby kept gagging and bringing it back up.

I pushed the pediatrician for an alternative and was given Aptamil Pepti which is brilliant - far milder in taste and palatable. She has been on it since he was 4 months and now loves it!

Did anyone find the aptamil pepti made their baby extra hungry? It made my baby go back to feeding every 2-3 hours and didn't seem satisfied! I put him back onto cow and gate comfort, now waiting to see a new gp as the old one wouldn't prescribe an alternative milk!

Hi there ,
I've been reading all this and I can confirm that aptamil pepti 2 was bad for my LO , aptamil comfort as well, aptamil Lactose free , cow and gate and so on.
He was on Nutramigen since 5 months old and seemed to be just fine with it until there was no supply anywhere in UK. Gp prescribed Aptamil Pepti 2 but is very bad , crying all the time , even when feeding, when playing, has a lot of gas and cries when farting. He's refusing bottles sometimes and even solid food . Very fussy Most of the time .Cow's milk allergy diagnosis also makes it worse on soya unfortunately. I have experienced this with my baby. now we started to shift from Aptamil Pepti to Neocate gradually. I heard Neocate is better than Nutramigen even if it's synthetic. As long as baby doesn't have a tummy pain and cries like mad , I am fine with it.
We have a dieteticin appointment end of October and I am hoping to sort this out as we are tired , all of us to swap formulas and hope for the best. I know it's hard but those that have issues with GP should push it as it is you dealing with crying not the GP. No matter how expensive it is , is baby's right to a better life with no pain at all. They all should be happy bunny's and parents as well as this times are hard anyway. We Don t need extra problems.

If any of you have any updates , please write and I ll do as well once I find out how Neocate is working for my LO.
God bless you all and God gives us patience as indeed we are in very much need of it.

Be careful with nutramogen as although it is hydrodgenised, it does still contain milk protein. My daughter was still very poorly on that and pepti. I breastfed her until she was 17 months old and then she had neocate until she was 5. I swapped her over by adding the neocate to breast milk. She now has five milk.

She has a very severe allergy though and at 13 is still life threatening.