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  1. #81
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    Quote Originally Posted by MissMuppet View Post
    Good luck Chelle. The response you got is what terrifies me - being told no more to my son's food.

    We've tried soy and Pepti in the past and both were disasters for us with poor DS losing so much weight and getting really sick. Our paed tried everything before prescribing Neocate.

    We have our allergist appt on the 7th Sept and I'm soooooo nervous.

    As an aside - has anyone tried the new Neocate yet? They've made it more concentrated and the tins have changed. After all the problems with the Nan HA changes I'm a bit nervous about the new Neocate....
    If you've already trialed both without success and with a history of weight loss there shouldn't be any problems....they're restricting for cases where soy will do so they don't have to fund it! so im sure you have nothing to worry about!

    As for the 'new' neocate i haven't heard about any specific formula changes unless its a recent thing, i do know they changed the name and packaging around may/june for some of the formula's, but there wasn't any make up change as far as im aware. As far as the NAN issue goes this isn't the first time companies have changed the ingredients of formulas....usually with any changes babies experience some level of discomfort but not like the NAN issue. I think that's a unique case so i wouldn't worry too much

  2. #82
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    Sigh. After running out of our Neocate a few weeks ago we managed to get into see his Paediatrician. Decided to try soy formula. It's not gone well for us, he's been severely constipated for nearly a week now - having a dozen screaming fits a day trying to get the poop out and every time he gets some out there's just more and more there.

    I want him back on Neocate, goodness knows how long it'll take to get in to see the allergist for a script. Nobody selling any on Gumtree either

  3. #83
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    Can you call your paed Meggles and tell them the soy isn't working and ask for another Neocate script to tide you over til Allergist? Our paed could get us more provided we had Allergst appt organised.

    We finally had our Allergist appt and she has confirmed stay off soy and dairy and gave us another 5 months scripts. We had skin prick tests and now need a blood test and appt to see GE for a gastrscopy. And she suspects gluten intolerance. Its a combination of scary and relief that we may get some answers.

  4. #84
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    And we've had no problems with the new Neocate. The labelling looks different, and its more concentrated so the scoops are slightly smaller but I think that's the only change and he's been fine with it thankfully, so looks like nothing to worry about.

  5. #85
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    I managed to track down an awesome Mama who lives a couple of hours away, and she had 7 tins that she no longer needed PLUS a script that she can fill periodically for us if need be.

    I'm going to make an appointment with the allergist again and hopefully get a script from him so I don't have to be using someone elses!

  6. #86
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    That's fantastic! What a relief that must be.

  7. #87
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    Hi Meggles - your paed and / or GP can prescribe Neocate if he's failed soy and if he has an appointment to see an allergist. A copy of the letter from the PBAC is at the bottom of this page.

    http://www.reflux.org.au/neocate-ele...-pbs/#more-722

    Print it off and take it to the doc with you. They should be able to give you the script.

    So sorry this is happening to you. Am in the middle of writing the covering letter to the PBAC now objecting to the decision and attaching a mega-petition with comments.

    Keep your fingers crossed.

    Jo Matthews
    President
    RISA Inc

  8. #88
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    Meggles, FYI for future reference if your bub has constipation again and nothing is working try Lactulose. It works really well! My bub has had constipation issues since starting solids and its the only thing that helped clear it up - now i make sure she has loads of fruit and vegies during the day and it seems to keep her fairly regular. Since starting on Soy tho she's gone back to constipation and her reflux has been aweful, altho for the first few days she seemed fine (the dr did say it would probably slowly creep up and not been an instant reaction). So im making another appointment to see him and organise a pepti-jnr script. Luckily i still have 2 Neocate repeats left so have plenty of time to organise it all. I'd prefer her to be on Neocate as i know it works but will be happy with whatever alternative im offered so long as she's happy and comfortable on it!

  9. #89
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    Default Neocate /elecare or any prescribed formula users

    I second the lactulose. Great stuff x

  10. #90
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    Default Neocate /elecare or any prescribed formula users

    Jo - did you get a good response for the petitions?


 

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