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  1. #1
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    Default Neocate /elecare or any prescribed formula users

    Hi all, anyone using Neocate etc .. Be warned.. Went to the pediatrician today and medicare/PBS have made some changes as of July this year.. Paediatricians now cannot prescribe elemental formulas. Children must be seen by a paediatric specialist such as a gastroenterologist to be prescribed. Not happy. The one we are being referred to is at Westmead Children's hosp and is over an hour away. Not to mention cost etc which I haven't delved into.. I wonder if they charge or if it's because it's a public hospital there will be no fee? That aside, I can't just go into our local paediatrician anymore which is yet another thing to juggle.
    I called Medicare and the PBS info line today. Was not given a reason however they confirmed it was true. I understand it may be needed for those specialists who dole it out without substantiating the need but in our case it's genuine and confirmed.

  2. #2
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    Oh and I should add.. I am waiting for a call back from the hospital regarding waiting times etc but have heard they're extensive.. My current repeats are fine as they were prescribed prior to July however if anyone doesn't have many repeats left I would suggest you contact paediatrician or prescribing professional and organise a referral to a specialist as soon as possible.
    Thanks!

  3. The Following 2 Users Say Thank You to Bunny Lover For This Useful Post:

    Alimia  (18-08-2012),MissMuppet  (18-07-2012)

  4. #3
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    I just discovered this today and am so upset. My DS has eating issues. He survives on Neocate which his paed has prescribed for us. I went back for another script today and she said that the rules have changed and now he has to see an allergist to get a script. She's seriously unhappy about the change because there is an 18 month waiting list to see a peadiatric allergist!!! That is why she had'nt previously referred us, because she only refers the worst cases onwards due to the insane waiting list.

    He needs this stuff. I am perfectly happy to see an allergist. In fact, I would LOVE to see an allergist for him. But they're impossible to get into.

    I was so upset to discover this today. I'm really worried about running out of his milk. He can't have dairy or soy proteins. He can't even tolerate Pepti. Neocate is the only milk he's been able to tolerate and up to now we've been seeing a pead and a dietician and looking at other options.

    How I wish I'd known about this change earlier so I could have seen my paed last month.

    I should add - it took me 2 months to get this appt with my paed so it wasn't like I left it to the last minute.

    And Neocate was already an 'authority script' in that only a paediatrician was able to prescribe it in first instance, and only after calling up for an authority number from whatever govt agency controls it. So it was never able to be dished out willy nilly anyway. The only reason I can think of is that its expensive and the govt is deliberately making it hard to get as a cost cutting measure. Nevermind that it is usually the last option left and stopping children getting it means leaving kids without food.
    Last edited by MissMuppet; 18-07-2012 at 17:58.

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    I'm going to go against the grain here, I am a mother of a child who was solely on Neocate as his little body could not tolerate anything else, solids included even around his first birthday so I understand what a pain this is for everyone, BUT in saying that I think its a fantastic idea that these children will now have to be seen by a Paediatric Gastroenterologist, these guys are specifically trained in dealing with this sort of thing and personally if a child is that touchy that they require Neocate they should be seen by a Gastroeneroligst anyway.

    We didn't see one until our DS was almost 4yrs old and I think had we been able to see him at the age of 6 months a lot of the pain and heartache we went through and are still going through with our DS may have been averted, hes a very very sick little boy and the extent of health problems where not picked up because our regular doctors just filled him up on Neocate and didn't see the need to introduce further specialists.

    The only thing that irks me is that it will be now even harder to see our gastro specialist because its filled up with some who really don't need to be there as this formula is way overused.

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    Look I have no problem with saying a GE or Allergist should see these kids. Like I said, I'd LOVE to have DS seen. The problem is the waiting list is 18 mths!! What am I supposed to feed my child in the meantime? What if someone has a baby like mine who literally throws up their entire stomach contents after every kind of formula except Neocate. If he had had to wait to see a GE or Allergist to get a formula he could keep down then he would have ended up hospitalised and extremely sick.

    As it is, it takes months to get an appt with just a general paed.
    Last edited by MissMuppet; 18-07-2012 at 18:41.

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    If your child is as sick as you say, I would imagine you would be given priority! Its amazing how quick you can go through the system when there is a real issue at hand, we've experienced that first hand.

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    But he's not sick at the moment because he's on Neocate and has done extremely well on it. His paed is really happy with him. I want to keep him well. I don't want him to have to get extremely sick again in order to get priority. I feel nauseous just thinking about it. Plus now, with this change, the waiting list will blow out further with people just wanting repeat scripts. Its madness.

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    anxious for no3  (30-07-2012)

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    Quote Originally Posted by placebo View Post
    If your child is as sick as you say, I would imagine you would be given priority! Its amazing how quick you can go through the system when there is a real issue at hand, we've experienced that first hand.
    The issue is here that unfortunately to get priority, her child would need to prove that he DOES get really sick on anything else and therefore would more than likely be left until hospitalized .. How is that fair?

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    If your child requires this formula as you say he does its irrelevant whether he is doing really well on it or not! he clearly has something going on within his digestive system or whatever & it should be assessed by a specialist. Your doctor or paediatrician will write a referral letter what is written in that referral letter is what will get your through the system you do not have to allow your child to get sick again to do that.

    I'm a bit confused as to why you don't want your child to see a gastro specialist, at some stage he is going to have to come off this formula and where will you be then? A child who cannot tolerate anything but Neocate has issues and from experience they do not go away on their own, he needs to see a specialist even if its just for peace of mind.

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    Nowhere  (19-07-2012)

  13. #10
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    Quote Originally Posted by Ezzabee View Post
    The issue is here that unfortunately to get priority, her child would need to prove that he DOES get really sick on anything else and therefore would more than likely be left until hospitalized .. How is that fair?

    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!


 

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