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  1. #71
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    Thanks mummy's! I'll see what the new paed says next week and ask about possible testing as im sure there is more to it than simply an anaphalactic reaction is the only way to get a script...otherwise all the CMPI bubbas would be left out with not alternative...

    Does anyone think its ridiculous that one of the exceptions for getting a script is 'failure to thrive' yet if you're on neocate this shouldn't be happening...so basically we have to take our bubs off the formula, wait for them to go backwards before getting a script?? (or at least that's the impression i get!!)

    I feel like someone needs to go on a current affair or something to shake up the government!

  2. #72
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    I totally agree!

  3. #73
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    Hi ladies,

    Apologies if I've already added this but we've started an online petition to both the Minister for Health and the PBAC (board who make decisions about prescriptions subsidised by the govt).

    If you have a second to sign both we'd be grateful. Also, sharing it on facebook or wherever to encourage your friends and family to sign would also be great.

    http://www.change.org/petitions/mini...s-for-children

    http://www.change.org/petitions/phar...s-for-children

    PLUS the letters and everything you'll need to go to the paed / GP are on our new website at
    http://www.reflux.org.au/neocate-elecare-and-the-pbs/

    Hope this helps and thanks in advance

    Jo Matthews
    President
    RISA Inc

  4. The Following 2 Users Say Thank You to JoMatthews For This Useful Post:

    Alimia  (18-08-2012),ChelleD  (14-08-2012)

  5. #74
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    Don't suppose anyone in Perth has a tin or two that we could buy until we can get a script?

    I thought we had 1 more repeat left but we don't and we're about to run out ((

  6. #75
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    Quote Originally Posted by PerthMeggles View Post
    Don't suppose anyone in Perth has a tin or two that we could buy until we can get a script?

    I thought we had 1 more repeat left but we don't and we're about to run out ((

    Hey hun, i bought a box off a lady on a facebook baby buy and sell page...ive also seen them on gumtree every now and then so maybe check out those places?

    I also got 6 sample tins from the allergist i went to, and i know most paeds stock sample tins too so maybe ring and ask for a couple of sample tins to get you thru til you can actually go through the process of getting a script?

  7. #76
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    Default Neocate /elecare or any prescribed formula users

    Hey, we are trying DS on pepti junior. If that all goes well ill have a few tins. Will let you all know!

  8. #77
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    Well i got a second opinion from another paed (a private one this time) - he was lovely and extremely thorough. He took a very detailed history asked loads of questions about her history and said he was confident she definitely has CMPI as well as a wheat intolerance.

    He's instructed me to trial her on soy for 1-2 weeks, if she reacts to that then he'll organise a pepti-jnr script and if that doesn't work then we go back onto Neocate. He was saying to me that one of the reasons the government were having issues with funding Neocate was because alot of paeds are bypassing the process and puting all babies on neocate when some would be ok on pepti-jnr or just soy so we have to go through this process to prove there is no alternative.

    So even though im not keen on puting her on Soy i'm willing to give it a go as i'd rather that than have her back on full dairy. Im not sleeping much as it is with her waking up 6-8 times a night so i don't want to add in anything thats going to make it worse! my eyeballs are already hanging around my ankles as it is !!

  9. #78
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    Default Neocate /elecare or any prescribed formula users

    Quote Originally Posted by ChelleD View Post
    Well i got a second opinion from another paed (a private one this time) - he was lovely and extremely thorough. He took a very detailed history asked loads of questions about her history and said he was confident she definitely has CMPI as well as a wheat intolerance.

    He's instructed me to trial her on soy for 1-2 weeks, if she reacts to that then he'll organise a pepti-jnr script and if that doesn't work then we go back onto Neocate. He was saying to me that one of the reasons the government were having issues with funding Neocate was because alot of paeds are bypassing the process and puting all babies on neocate when some would be ok on pepti-jnr or just soy so we have to go through this process to prove there is no alternative.

    So even though im not keen on puting her on Soy i'm willing to give it a go as i'd rather that than have her back on full dairy. Im not sleeping much as it is with her waking up 6-8 times a night so i don't want to add in anything thats going to make it worse! my eyeballs are already hanging around my ankles as it is !!
    Sounds this this paed is a bit better. Let us know how you go!
    DS has been on pepti for almost a week.. A slight reaction initially but nothing for a couple of days. He does this though. All of a sudden it will flare back up.

  10. #79
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    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....

  11. #80
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    Default Neocate /elecare or any prescribed formula users

    Which new Neocate? I wasn't aware of this.. DS gets the vanilla one which was only recently introduced.


 

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