6 month old baby - soy formula or nutramigen? Please help!!

[Mintie190]

Hi, so the history is...my baby would never latch on so I have never been able to breastfeed her. Instead I have been expressing every 3 hours and giving her breastmilk by the bottle. I was planning on doing so up until she was 6 months old and then switching to formula. At 5 months, my milk supply went down so I gave her a bottle of formula (Hipp Organic). She vomited huge amounts, her whole body was wretching, turned pale, limp and unresponsive. We ended up going to A&E by ambulance. At 6 months I gave her some baby rice mixed with formula (Aptamil). She had all of 1/2 a teaspoon and had the same reaction.

I saw a paediatrician allergist yesterday. She had a skin prick test for cow's milk allergy but it was negative. Nonetheless, the Dr thought she was allergic. She mentioned something about a gut sensitivity. Then I saw the hospital's dietician who asked "how do you feel about soy formula?" I was totally ignorant so didn't have an opinion. I'm now waiting on my GP to give me a prescription for it. (Don't know why the hospital couldn't give me one.)

Today I have read all sorts of things about soy formula and am panicking. The dietician said it was unlikely that my DD would take nutramigen after having breastmilk for so long.

I don't know what to do now. My milk supply is waning and to be honest, I don't think I can keep up the expressing for much longer. It's exhausting and is affecting my relationship with my baby and husband.

What other options do I have? Would goats milk formula be ok for her? I've read bad things about it too.

no, I dont think goats milk formula would not be good for your baby.

there are two problems here, it doesnt sound to me that your baby has a milk intolerence, it sounds like milk allergy a IgE response.
you need to ask that question of your gp.

if he confirms its IgE allergy, you need a special formula, that is milk based but has totally changed protein strands, ( the milk protein causes the reaction btw) ask for a neocate or other brand of allergy milk.
soya is not recommended these days because of two reasons, one is a health risk for boys in particular, and the fact that introucing soya a bean, or legume to an allergic person may not be a good idea, esp as soya is within the same family as peanut.

if confirmed as a intolerence, a upper or lower gut reaction to cows milk you can still use a cows milk formula, but an allergy one that has partially changed protein mixed with normal formula.

good luck. you could ring the anaphylaxis campaign help line for advice in this area.

Thank you. I originally went to my GP who referred me to the paediatrician allergist. I should have taken notes as even though it was only yesterday, I can't remember everything that she said but she did say that it is an allergy to cow's milk. Neocate wasn't mentioned as an option - just the soya and Nutramigen.

The dietician was supposed to write to my GP recommending a prescription of soya formula but I will see if I can convince whichever GP I get to see to give me a prescription for Neocate. Any arguments I can make in support of her getting it? When I saw the GP last time, he was very ambivalent about the whole thing. I'm not used to dealing with doctors and find it hard to get anything from them!!

It's all complicated by the fact that we are flying to Australia on Thursday and I am scared to get on the plane with no alternative food source other than my expressed milk. If my pump breaks (I am taking 2 in case!) or more likely, my baby wants more milk than I can produce if she doesn't sleep well on the plane, then I am going to be really stuck.

Did your baby have the RAST blood test or was it just a skin prick? My dd had issues with reflux, nothing as severe as yours, and had the RAST test while an inpatient. She was tested for allergies to cows milk proteins and soya. She was negative, it was not an IgE mediated reaction but likely to be IgG-intolerance rather than allergy. Your dd sounds as though she had an allergic reaction even though the skin prick was negative. My dd was under 6 months and I was advised that formula is no longer a first line treatment for allergies/intolerances to cows milk proteins due to the concerns re fertility. I think it is less of a concern in children over 6 months but I wouldn't feel happy about it myself. Goats milk can cause a reaction too in 40-50% of children who have cows milk issues because the proteins are very similar. It is also not nutritionally complete so I was told this was not an option. My dd had nutramigen, which is milk based but the proteins are hydrolysed so broken down so the body does not recognise them. A small amount of children still do react to this too. My dd did not improve so she was put on Neocate which is not milk based but made from oils, it is disgusting, so is nutramigen. we had to flavour it with 1-2 drops of vanilla as advised but she still hated it. I think your dd definitely sounds like a Neocate candidate as her reactions have been so serious. I would also ask about an adrenaline pen, particularly with a long flight ahead of you. I really hope you get some answers on this. Good luck.

It became apparent at 6mnths that my DS2 could not have cows milk.
The hospital prescribed him nutramigen.
He wouldn't drink it so we snuck it into his food. He was fine with it on his weetabix etc.
The advice we were given was that a Soy formula would be too close to cows milk as would be Goats milk.
I hope that doesn't confuse you further.

Sorry that should have said soy formula is no longer a first line treatment.

It was just the skin prick test that she had. They didn't offer any other test - and this was a large and very reputable hospital in London. I was just referred to the hospital's dietician who was supposed to write to my GP to recommend a prescription of soya formula (after giving me the option of soya or nutramigen - and me being none the wiser as to what is better). Such a roundabout way to do things and considering time is of the essence with our trip, I don't understand why I still have no alternative food supply for her. I also don't understand why everyone on Mumsnet cautions against soya formula yet a hospital dietician and paediatrician allergist both suggested it as the preferred option to me. Sigh..... There is no way I am giving her soy formula so I guess I go on Monday to my GP and fight for a prescription for nutramigen.

I have a couple of tins of neocate (unopened) going spare if you want them

Just PM me if you want them....

It was my dd's paediatrician and paediatric dietician who advised against this. It does cause confusion alright when some say it's ok and others don't. Like you i knew nothing about this before my dds problems. I know the caution with soya is more specifically for babies UNDER 6 months. I have also read that the risks/benefits have to be weighed in such cases with soya, ie, where there is a risk of your child not drinking anything at all if she refuses nutramigen/neocate, perhaps this was why the dietician suggested it although you would think they would suggest giving nutramigen/neocate a trial first. You can buy this in a chemist (well you can in Ireland) but it is very expensive so you could give it a try yourself before you see your gp if you can get some if this was one of the options offered.

Thanks so much for your posts. I really was getting so panicky this afternoon reading about soya formula and realising that I was no closer to finding a solution to my baby's allergy.

I have now discovered that Nutramigen is available from a UK based online pharmacy which delivers next day so if I have no luck with my GP on Monday I will buy it from there just so I have it on the plane (although I will try it on her beforehand - fingers crossed she takes it...). If it suits her, I can get the GP to prescribe some when we get back. At this stage, I only need it as a back up as I will still pump while I am away. At least I will have the support of my family around which should make it easier to do so.

And simpson that's so kind of you to offer the Neocate. To continue with my ignorant questions, which is better, Nutramigen or Neocate?

I'm not sure which is better, but my dd had a reaction to nutramagen and we tried neocate which she's had ever since. We also tried one beginning with a p but I can't remember the name which she also reacted to.
So I don't think its about which one is better but which one suits them better.

Nutramigen is still cows milk (casein) based, the proteins are broken down though so most children don't react to it as their immune systems don't recognise it. A very small number do still have problems with it. In these cases they are put on neocate which is not cows milk based but amino acid based (the stomach has to do very little work to digest it) and derived from oils. It is more expensive than nutramigen, usually nutramigen is tried first. Just to make you aware the tins are half the size of normal ones. I would use 2-3 a week on formula only feeds, not that my dd would drink them but still made the bottles up anyway. If she doesn't like the taste the dieticians t nutramigen id say I could put in 1-2 drops of vanilla to sweeten the taste as it is very bitter tasting.

neocate is about £38 a tin I beleive And yes the tins are tiny (about the same size as the smaller tins of formula you can buy.

I would try the nutramigen first and see how you get on.

I agree it is very confusing but our consultant was quite clear that soya formula was not recommended for babies under 1 (and British Dietetics Association states not under 6 mths www.bda.uk.com/publications/PaediatricGroupGuidelineSoyInfantFormulas.pdf) due to phyto-oestrogens plus up to 50% of children allergic to cow's milk are also allergic to soya so not ideal. I would definitely ask for Nutramigen and yes, it does taste pretty yucky but the best way to get them to take it is to mix it with baby's usual milk (in your case breast milk) to get them used to it gradually and use it in food eg on cereal.