Neocate - in need of some advice from other Mummy's!

ok, long story short.

Bub is 7mths old.
She has had a noted dairy and lactose intolerance diagnosed at about 6 weeks old
she recently had a hives reaction to raffertys rice cereal which we discovered has wheat/gluten in it!
subsequently we have taken her on and off solids twice, due to foul smelling poos and general gut upset. (on the advice of mchn and gp)
now we have a referral to a paediatric immunologist at PMH for a RAST test but cant see him till 22nd Dec :doh:
I am desperate to get back to her normal paed to get a prescription for neocate as the gp cant prescribe it but cant see him till 17th of Dec :doh:

Formulas we have already tried
S26 Gold
S26 Original
Nan Ha
S26 Lactose free
Karicare Soy
Elecare

She will only take S26 Soy


I managed to get my hands on some Neocate in the mean time :shhh:

but.. given that s26 soy is full -o-sugar she hates the neocate (have to say it doesnt taste the best)

I know its totally naughty doing this without my paed - but I have a feeling that the soy is making her sick too as she is cutting her feeds down to 100ml and given that she is flaring up with more than one allergen I think its time to change her milk. also at night she is waking every 30 min or so crying.

So my question is.. how did you change your bub over to neocate?

have you tried a goats milk based formula.
I have had many kids respond well to goats milk and not have any allerggic reactions.

i have had my daughter on neocate, but it didn't work for us, she refused it and really struggled to gain weight with it. but that is my experience.

i hope you get some answers soon amd find out how to stop your little one reacting to allergens

My first thought was to try Karicare goats milk formula.
As for Neocate, its up to you what you decide to do, but one of the kids at my DS daycare is on it and as per the peads instructions, they were told to mix up to 6 teaspoons of icing sugar in with it to hide the bitterness.
So I dont think its cause the soy is loaded with sugar, more that the neocate is truely awful stuff.
Do you really want to go down this path without medical supervision?
Try the goats first...
GL

Unfortunately this is a common problem with neocate. Elemental or hydrolysed formulas don't taste good so many babies refuse them. It is also important to know that about 50% of babies that react to dairy react to soy also, and that neither soy or goats based milk/formulas are good for babies under 12 months. While many GPs will recommend them, many paediatricians who specialise in allergies and infant feeding strongly advise against using them and there are many research studies to back this up.

So the question is what can you do. Firstly, are you sure she reacts to dairy? You can't test for dairy intolerance or allergy in a young baby as the tests nearly always come back positive (see this article - Australian Breastfeeding Association - Lactose intolerance and the breastfed baby). Also lactose intolerance in babies is nearly unheard of. If your baby was lactose intolerant at 6 weeks she would not have tolerated any quantity of breast milk or formula and would have been hospitalised. So given that your little one has since reacted to gluten, it might be that gluten is the only issue, not dairy at all - although of course it could still be both. The very best thing to do is to see a paediatric allergist or dietician who specialises in this area and work out properly exactly what the problem foods are. Otherwise you could be un-necessarily cutting things out.

In the meantime, if you want to persist with the neocate until you know more about the problem, it might be a matter of persisting. I think I have read of mums mixing some maple syrup in to help their babies drink it - this is probably not an ideal solution but would be better than a starving baby I guess. Other than that, I would ask your GP or paed about it, they are sure to have encountered this before and might have some tips.

All the best hun, this is a difficult situation for you :hug:

Well we had an awful night. she was up from 11 - 3.30 am. After the neocate, it was like I gave her a redbull.

We have decided not to continue - its just not worth it till we see the paed again.

Livinthedream & kawazuki- I have never tried goats milk formula, because of the dairy intolerance, I thought they would be similar?

Mantaray - we were recommended by our paed to go onto soy milk - not by a gp. Infact our paed was the one that said she was lactose and dairy intolerant. I was in hospital for 8 days post birth because she wouldn't put on weight that she had lost and wouldnt breastfeed and EVERY feed she had of the hospitals recommended formula (s26 gold) was coming back up, don't get me started on the hospital it was a joke. Anyways, the paed gave us a tin of elecare and s26 soy and said to try them both. The elecare wasn't working she threw it up and the soy was the only thing that she enjoyed drinking - even tho she still brings some up.

Anyways, I am at my wits end!:shakehead:

It's really stressful when feeding is a problem. It must be very hard going for you atm :hug:

Unfortunately not all paeds keep up with the latest research and of course all will have their own opinions and interpretations. If you see 3 different paeds you can be told 3 different contradictory things. That's why it helps to see one that specialises in the area that you need most - in this case infant feeding and food sensitivities. It is quite a specialised area - much like a sport's physio is a better idea for a sporting injury than a normal physio. Dieticians who specialise in infant feeding and food sensitivities are really knowledgeable in this area also. In the case of soy formula, have you ever googled it? A lot of the information about why soy is not recommended under 1 year of age is publically available. In fact, there is a thread on it on BB already. Have a read of this - https://www.bellybelly.com.au/forums...by-120842.html.

At the end of the day as a mum, all you can do is take in the information offered from the medical professionals and other sources and decide for yourself what the right option is for you. It is not always an easy thing to do. In fact it is usually pretty darn difficult. I am a big believer in mothers' instincts - what is your heart telling you?

I'm sorry to hear that last night was so tough :hug: Could it be coincidence? I guess all you can do is see how she goes tonight. What are you feeding her today?

Sorry to sounds daft, but just curious.
How did they rule out reflux?

Limeslice - she has reflux too.. sorry... I don't think I mentioned that. Shes on Zoton.

Mantaray - shes back on soy today and settled - we will see how this evening goes. I succumbed to the rice cereal though, I know that she can eat that - funnily she slept for 2hrs after that feed. I am wondering if it was the rice cereal or pure exhaustion.

I am fully aware of all the bad things associated with soy, but right now this is all I can feed her or should I say get her to eat.

Sorry, I haven't had time to read everyone's posts but just had to reply.

DS was on an elemental formula from 4 weeks of age, so we had no transition issues. My friend, however, who changed over at a later stage with her DS, did so by gradually phasing in / mixing the Neocate with the existing formula (which is obviously not the quickest way to go about it, but for some, it is the only way). So start with one scoop of Neocate to x scoops of the soy (you will need to check the scoop sizes as they are different as you know). You can also try and sweeten it to move things along, but in all honesty, I think it will take more than a bit of sugar to mask that nasty taste / smell. I know that soy isn't ideal, but perhaps you can just use it as a stepping stone to try and phase in the Neocate?

Something else you may consider is an extensively hydrolised (but not quite elemental) formula called Karicare Pepti-Junior. This formula works in 98% of cases of protein / lactose intolerance AND it tastes heaps better. Just something you may want to look into if you can't get the Neocate thing working.

As an aside, my Paediatrician thought that goats milk formula was a really bad idea for cows milk protein intolerance (we tried it before seeing him and DS nearly screamed the house down afterwards - he was really sick). There is a theory that it is closest to breastmilk - this is still strongly debated.

So sorry to hear how you are struggling - I know how hard it is when their tummies hurt :(

Thanks limeslice, I will look into karicare pepti junior. (I have never heard of it!)

Thanks for the warning re goats milk. I haven't considered that before, also never heard anyone compare it to BM?

Yeah, I've heard lots of people say that goats milk is closest to breastmilk. So untrue - goats milk has totally different levels of minerals, proteins etc and is totally not recommended for babies. One leading US paediatrician I got to meet earlier this year when he was in Aus for a seminar series was explaining how bad goats milk is for babies.

GL for tonight Krikkit. I hope it's a better one for you :hug:

We avoided the goats milk as it is still based on milk proteins. With dd1 she threw up big time on neocate, she didnt mind the taste as it is similar in smell and taste to the lactose free one she was on. we haven't tried Ds on it as his weight has finally stabilized and he is growing on the lactose free formula. It was going to be the next step if he kept losing weight at such a rapid rate.

ughh.. our chemists don't carry pepti junior. So.... they are ordering us one tin.

Cross fingers tonight she settles, I am seriously over it. The visit to the paed couldn't come soon enough.

How did you go last night hun?

Well, last night she went down just before 7pm. Then woke up at 8pm - she decided that it was play time and stayed up till 9.30pm. She finally fell asleep and woke up at 2am for a feed went back to sleep and resettled her at 4.30am. Then up at 6.15am.

Thats the best night we have had for a while.

Today she fell asleep next to me in bed by herself for her morning nap without me settling her. Then her midday nap she settled herself too :pray:

Then the arvo I had to help her along to sleep.. but she slept for 2hrs without me settling.. it was a GODSEND! lol.. she never sleeps for more than 30-40 min.

Safe to say I feel refreshed. :clap:

:dance: Yay for small mercies!
Hope she carries on in the same fashion for some time to come! :)