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  1. #11
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    No no.. It's not that I don't want him to see one, I have no objection to it. Cost aside. It's the waiting periods that will cause issues for most!

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    MissMuppet  (19-07-2012)

  3. #12
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    Quote Originally Posted by placebo View Post
    A referral letter from a treating doctor with the FACTS is enough! they will be able to pull his records and see a history.... you don't need the child hospitalised.. seriously!
    Let's hope not!

  4. #13
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    Miss muppet, I see you live in Brisbane. Which hospital do you go to? I work in the pharmacy Dept in a QLD hospital. If you are able to obtain a hospital prescription for Neocate from ANY dr (go through emergency if you have to) we will dispense it. It will give you time until you get to see an Allergist or Gastro spec. PM me if you would like to know more.

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    Eko  (18-07-2012),MissMuppet  (18-07-2012)

  6. #14
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    Thank you Ngaiz. I have a prescription from my Paed that will last another 2 months, and my local pharmacy keep some ordered in for me, so I have some for now. My concern is for when that runs out. Thank you though.

    Placebo - I have repeatedly said I would love DS to see a GE or allergist, so I don't know where on earth you get the idea I don't want him to. The problem is that demand far outstrips supply. My paed herself has said she is very concerned at this new policy, purely because of the lack of available specialists.

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    Quote Originally Posted by Ezzabee View Post
    Let's hope not!
    I really really doubt it!

    not to mention if you have a new repeat you have quite a few months up your sleeve, I think we got 8 tins per script x 5 repeats, (I think we went through 2 tins a week with full time feeding a 12 month old child) so should be a good 5 months in there... and the PP has given you an option if you run out in the mean time.

    Just be thankful we live in a country where we have these options available to us for virtually free of charge.

    By the way we travel up to an hr and half each way up to 4 times a week to our childs specialists so please don't think I have no clue as to what an inconvience it is for you, I would love to be able to drive up the road to see a doctor for our DS but sadly his medical needs are just way to high.

  8. #16
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    Oh I would give my left leg for my DS to be seen by specialists at Westmead, they have some of the best in the world and they have a specialist area that could save my sons life, but sadly we live out of state and they won't have a bar of us.

    You have no idea how lucky you are to have access to that hospital.

  9. #17
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    Quote Originally Posted by Ngaiz View Post
    Miss muppet, I see you live in Brisbane. Which hospital do you go to? I work in the pharmacy Dept in a QLD hospital. If you are able to obtain a hospital prescription for Neocate from ANY dr (go through emergency if you have to) we will dispense it. It will give you time until you get to see an Allergist or Gastro spec. PM me if you would like to know more.
    That's so nice of you Ngaiz .

    It frustrates me in the extreme to see this. Babies who are on formula are generally on it for a reason. In my case, DS was on S26LF formula on script. My GP was able to give it to him without a referral and simply on my say so as she believed me when I explained how family members in both mine and DH's family were lactose intolerant and that our son was exhibiting the exact same symptoms as they did when we gave him normal formulas.
    I was very VERY lucky to have that happen, because people in our area used to empty out the supermarkets and pharmacies of the LF formula as soon as it came in. Having a script ensured that the formula was there and my son could eat without severe discomfort.

    That worries me. So many people who live in rural areas or who are in the sort of area where I was and don't have the chance to get what they need from a supermarket or chemist are at a huge disadvantage. Waiting times alone could lead to really bad situations

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    PM me whenever if you start getting low. I'm more than happy to help anyone in this situatuation but only know how it works in QLD sorry.

    ETA-We also offer a courier service for those that live rural or near the QLD boarder.

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    As a mum of a boy who also has severe gastro problems it bothers me that it is now so hard for those who need neonate to get it. I'm all for these kids seeing a paed gastro or allergist but the current wait times ate crazy enough without adding parents who simply need a script. We ate already part of the system and it can still take weeks or months to get in. And I'm sure for most it is going to be cost prohibitive to see a private paed gastro. Initial consults are about $390 with follow ups about$150. So then it will fall onto our health system to now fill up valuable time and resources for a script. Our hospital system doesn't cope as it is. Yes we are lucky to have it and it's one of the best. But this is not right.

    And we are off to westmead next week. Sorry.

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    MissMuppet  (19-07-2012)

  15. #20
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    Over here in WA there is a massive massive wait list to see a GI they are stretched to the absolutely MAX it is insane, there i 2 full time Pead Gis for the whole state, both fabulous drs but both stretched as thin as they can possible go, My Daughter was at HOME on IV food total parental nutrition into her heart for 6 months 3 months prior to that in hospital and in that time we seen the consulant 3 times in hospital ( sunday rounds they do thre own TPN orders on a sunday no reg) and in the 6 months at home i did NOT see them we had weekly reveiws with the pead and bloods and what not and they got he GI reg to chart review weekly to chart her TPN.

    My Daughter is mainly managed by the surgeons and the peads and endo team and is on vivonex peadiatric she didnt absorb neocate or elecare and had inflamation in her colon on elecare ( specific was lymphonodular hyperplasia ) she survives 100 percent on vivonex its even more expensive than neocate and elecare and even more broken down.

    Since weaning my daughter of TPN 18 months ago at home the only time we have seen the GI team was in hospital last november when she needed to go back on TPN because she was recovering from bowel surgery, we dont see them because we dont need to her care will not change, the only thing they can do for my child now is transfer her over to the gut failure clinic in melbourne and re do a heap of nasty invasive tests that will actually be of NO help to my child they will either confrim that her bowel is failing and one day she wil be on TPN for ever until she gets a transplant, tell us that they have already failed and she should be on it now, or tell us she needs more surgery, fact is untill there is evidance that any of that is needed or it will work we wont be having any one go any where near her.

    So yes we are under the GI team but we dont see them, already the PBS has stopped letting her have non dairy probiotics to stop her getting C diff, with out the script of a GI so our pead has had to email the GI to get one for that, and now likely for the feeds as well.

    I can understand this being done for GPs i dont think GPs should be able to write scripts for it, kids that dont need it shouldnt be on it but kids that really do and are under the hospital should get scripts for it. My daughters feed for a carton of 6 boxes is around 1000 dollars we use 1,5 cartons a week to 1500 dollars worth every single week, i really hope this info is un correct i will be going to pharmacy tomorrow to make sure i can still get my daughters feeds, if not i will be hoping to get it sorted ASAP and i hope to god it does NOT been re doing invasive tests on my daughter its taken us 6.5 hard year to get her tolerating her feeds i hope to god red tape wont stuff that up

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