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

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  1. #1
    Registered User

    Nov 2008
    Perth
    582

    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
    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

    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

    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?

  2. #2
    BellyBelly Member
    Add kawazuki on Facebook

    Dec 2008
    Paradise. QLD
    2,288

    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

  3. #3
    Registered User

    Sep 2008
    Gold Coast
    1,153

    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

  4. #4
    Life Subscriber

    Jul 2006
    Brisbane
    6,683

    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

  5. #5
    Registered User

    Nov 2008
    Perth
    582

    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!

  6. #6
    Life Subscriber

    Jul 2006
    Brisbane
    6,683

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

    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 Could it be coincidence? I guess all you can do is see how she goes tonight. What are you feeding her today?

  7. #7
    Registered User

    Dec 2006
    Melbourne
    3,737

    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.

  8. #8
    Registered User

    Nov 2008
    Perth
    582

    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.

  9. #9
    Life Subscriber

    Jul 2006
    Brisbane
    6,683

    How did you go last night hun?

  10. #10
    Registered User

    Nov 2008
    Perth
    582

    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

    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.

  11. #11
    Registered User

    Dec 2007
    Victoria
    7,260

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