Neocate, Elecare and the PBS

As of 1 July 2012, the Pharmaceutical Benefits Advisory Committee (who administer the Pharmaceutical Benefits Scheme or PBS), have made changes to the way amino acid-based forumlae like Neocate or Elecare can be prescribed for children under 24 months. Theoretically, now only paediatric gastroenterologists, a specialist allergist or clinical immunologist can now write these prescriptions.

HOWEVER, paediatricians and General Practitioners can still prescribe these formulae “in consultation with” any of the specialists above.

Complaints

RISA is a big fan of the wonderful work of our medical professionals and we are aware of how much more difficult the lives of our babies and kids would be without their ongoing efforts. Further, we’re also aware that paediatric gastroenterology is a relatively young profession and that knowledge of it throughout the rest of the medical profession is not as thorough as other areas. That is improving and RISA is doing its best to contribute to that education effort. We hear lots of stories of parents involvement with the medical system – both exceptionally good and sometimes not so good.

Glenda and Sherryn’s story

Sherryn was not an easy baby, but I thought it was me. She was my first baby and I can remember bawling because I felt like such a failure. Becoming a parent came as a huge shock and although I had desperately wanted children, I felt so inadequate and wondered why everyone else seemed to cope so much easier than I did.

Glenda and Natalie’s story

Natalie was born in 1992, a desperately wanted baby. She was born in respiratory distress, which took a while to settle and she spent several days in the Special Care Nursery needing oxygen and being tube fed.

At home, she wanted to feed every 2 hours, which is a pattern her sister had had. She hated being laid down flat and would often cry if I tried. She did not sleep well either, and at 12 months was still waking a dozen times overnight, and rarely during the day.

Advocacy – making things better for our kids

So if you’re a reflux parent you know how few people understand what you’re going through. And that includes medical professionals – not just your relatives and friends. That’s why RISA exists, right?

While the prevalence of GORD in the general infant population runs somewhere between ten and 20 percent(1), the incidence among premature infants is significantly higher ‐ recent studies suggest around 90%!(2) Perhaps unsurprisingly, the incidence among the general infant population is not dissimilar to the incidence among the general adult population.

Kids reflux – the facts and the stats

Did you know:

1. Reflux affects up to 8% of children and a higher % of infants
2. Some estimates put it as high as 1 in 5 babies
3. It is estimated that 65‐85% of premmie babies suffer with GORD
4. In 2005 there were 259,800 births in Australia
5. Over 34,000 babies are likely to suffer with reflux in Australia
each year

Spread the word and help a reflux mum

Are you a ridiculously busy reflux mum who believes in RISA but doesn’t have much time on your hands? You can still help. Here’s how: Forward our newsletter or link to our website to people who might have a new baby. Remember about 10% of bubs are likely to be suffering from reflux. It’s not that uncommon. Tell a midwife or a nurse. Do you have any health professionals in your circle of friends and family? Tell them about your experiences & RISA. Forward them our newsletter or a link to our website. Like us on Facebook. It takes a second.

Bel and Jude’s story

I had a pretty normal pregnancy with Jude, ate everything I should stayed away from everything that was warned about. No drinking, smoking raw meat, eggs, cold meats, salad bars takeaway. The list goes on. I didn’t die my hair and I didn’t use chemicals to clean. Why am I telling you this? Just in case there is another reflux mum reading this, It is nothing you did. I did everything right and at 3 years old my son still suffers from silent reflux.