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  1. #1
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    Default Changes to the way specialised formulas can be prescribed by doctors

    Hi all,

    I'm the National President of the Reflux Infants Support Association (RISA) - a totally volunteer organisation & not-for-profit - and we're very concerned about changes to the regulations about specialised baby formulas that will mean that GPs and paeds can't easily prescribe necessary baby formulas for those who need it. (These are generally rare circumstances compared to the general population but for those who need it, it can be life-saving and certainly life-changing). For those in the know, I'm talking about amino-acid based formulas like Neocate or Elecare.

    More info and the petitions are available here.
    http://www.reflux.org.au/neocate-ele...-pbs/#more-722

    We'd be grateful if you'd consider signing the two online petitions. Its a pretty simple click of a button.

    With thanks

    Jo Matthews

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    Default Changes to the way specialised formulas can be prescribed by doctors

    Doesn't affect me and I pray it never does but bumping this thread for others x

  3. The Following User Says Thank You to Sarelou For This Useful Post:

    JoMatthews  (02-09-2012)

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    Default Changes to the way specialised formulas can be prescribed by doctors

    Quote Originally Posted by missie_mack View Post
    Personally based on my experience I think it may be a good thing for reflux babies. I had to see three GPs and a paediatrician to get my DD on losec. Most wanted to take my daughter off the breast and prescribe thickened formula and medical formula even for silent reflux. I have since met so many mothers who felt that turning to formula was their only option based on the advice of a GP.

    I also think it can be a little misleading to post this in a reflux section because this does not impact all refluxers, just those that have allergies that cause reflux (which is a very small minority!)
    I have to disagree PP. Jo is from RISA which is specifically about reflux support and many parents whose babies suffer from reflux come here for support.

    I'm sorry about your situation but most parents seeking answers for their baby's reflux do find that formula is the best option for them as mothers, their baby and their family and it's not right that those who choose that option should have to jump through hoops to get a formula that will really help the issue. Many of these parents are well informed about 'breast is best' and have chosen formula as an option even prior to trying to find solutions for reflux.

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    beebs  (03-09-2012),Purple Lily  (03-09-2012)

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    I agree miss Mack, I took my ds to our local gp and he insisted that it was colic and I had to just basically ride it out. This went on for months when finally ds was hospitalized. On observation it was discovered that ds had severe reflux and a cows milk protein allergy and we were to referred to a gastro specialist. I wish looking back I persisted to see a specialist

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    Default Changes to the way specialised formulas can be prescribed by doctors

    Making parents and GPs jump through hoops to feed babies the right formula is ridiculous! I don't understand why they would make these changes.

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    beebs  (03-09-2012)

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    Default Changes to the way specialised formulas can be prescribed by doctors

    I signed the petitions a few weeks ago when we were discussing this in another thread.

    DD suffered terrible reflux as a result of food intolerances and Neocate was an absolute godsend. We had tried Zantac, losec, thickener (while still BFing), adjusting my diet, passive management (raised mattress etc) without any improvement. Weaning her onto Neocate was our last resort but it worked. DD finally started gaining weight - in the 3 months she was BFed she had gained less than a kilo since birth - and was a happy., settled bub.

    I wouldn't wish what we went through on anyone, and this is why I think it's ridiculous that they are making it harder to get this formula. Imagine what this will do to the already long wait lists to see a paediatric gastroenterologist, immunologist or allergist. The poor kids with extreme issues will have their specialists clogged up with people needing scripts for formula.

    I think restricting the prescription to paediatricians is sufficient, they are already specialists and should be able to accurately and responsibly diagnose and treat the causes of reflux (and other food related issues) without the government's penny-pinching antics making these kids suffer. But I guess they did promise to get the budget back to surplus...

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    Quote Originally Posted by Cue View Post
    Imagine what this will do to the already long wait lists to see a paediatric gastroenterologist, immunologist or allergist.
    I don't think anyone ever thinks of things like this, we waiting 3 months to see a paed GI, even though my child was malabsorbing and so deficient in Iron that he couldn't walk, eat or breathe properly.

    Imagine if a newborn wasn't feeding properly and had to wait that long AND they can't just shuffle other patients around - everyone who is there is a complicated case otherwise they wouldn't need a paed GI.

    I think maybe this could be solved with Doctors being brought up to date with the data. Sounds a bit easier to me.

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    Default Changes to the way specialised formulas can be prescribed by doctors

    Quote Originally Posted by missie_mack View Post
    There is no medical research (and there has been research done!) showing these formulas do anything for those suffering GORD without an allergy. There is also no medical research showing that formula improves reflux. That doesn't mean that everyone is without the option of formula, just that turning to it for reflux issues is often under direction of GPs. Most people take the advice of their GP as gospel. As I said I visited three GPs with my DD's reflux all whom told me I needed to use formula to resolve this issue. They told me formula was my only option. I could have continued visiting GPs had I not insisted on a paediatricians appointment, not one offered alternative treatments like mylanta or proton pump inhibitors.
    GP wise I agree with you, I got the same advice from mine, that she would out grow it! She didn't! GPs definitely can get it wrong, i was so frustrated with their lack of concern and knowledge but paeds should be able to prescribe this formula easily as they are specialists. My paed ruled out allergy just by the symptoms my DD had and she's on a high dose of nexium now.

    Yes not all reflux issues are related to an allergy but once an allergy has been established, it needs to be easy for parents to get this formula right away.

  12. #9
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    Hi ladies - in part, I agree with you both.

    PP - I do realise that the level of general knowledge about gut issues among GPs (and paeds) leaves something to be desired. But I think this is a horribly blunt instrument to deal with that. Lots of them do know what they're doing and to take away this option from them also adds to a ridiculous amount of pressure mounting on paed gastros (and allergists) who are already overworked with enormous waiting lists where they even exist in australia. So people who really need to get access to these specialists (not just with garden variety reflux or intolerances) have an even harder time getting access. GPs and paeds should be able to diagnose and deal with it (given how common it is) even if, in some instances, they don't.

    Couldn't agree more that breast is best for reflux bubs - no question. But there are situations, even after strict elimination diets and lactation consultants have been involved, where these formulas are necessary to get the baby through. For instance, often the pain the child is experiencing (for whatever reason) has an effect on desire to feed and in turn on supply and these formulas are required to supplement and preserve BFing in cases where the child can't tolerate cows, soy or other protein intolerances. (This is what happened to me). If I hadn't had Neocate, prescribed by my paed to supplement I wouldn't have been able to breastfeed as long as I did (which still wasn't as long as I would have liked). Any other formula just had her writhing in pain and further refusing to feed.

    The reason I say breast is best, particularly for reflux bubs, is that it is the easiest and quickest for them to digest and void and for kids with a motility issue of the GI system, the sooner they process what's in their tum, the sooner it stops burning their little oesophaguses. And also, the less constipated they become which in turn contributes to the length and severity of reflux episodes. Absolutely no disrespect intended at all to those who need to bottle feed for a variety of reasons. BFing refluxers is an especially challenging undertaking. But very worthwhile if you can manage it.

    Most GPs and paeds do know how to diagnose this kind of allergy in babies and provide sound advice about preserving breastfeeding - I'm sorry that you've had such a dreadful experience that didn't support your breastfeeding or accurately diagnose your baby. I do suspect that your kind of experience has contributed to the decision - I guess I just don't think that this is the most practical solution.

    BUT there is a huge amount of work to be done in educating the medical community about gut issues in children. Its a relatively new field (started around the 80s), before that really, really severe refluxers who refused to feed and "failed to thrive" died of malnutrition. But a heap of GPs and paeds were trained long before paed gastro stuff was included in the curriculum and many are still dismissive of babies with reflux, various allergies and intolerances and other GI issues.

    I really can see where you're coming from and I don't disagree with your reasons. I just don't think its a reason to stop paeds and GPs from prescribing - because lots do know what they're doing and the number who are listening and learning is growing all the time.

    More food for thought I guess.

    Thanks both for your feedback.

    Cheers

    Jo


 

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