An open letter to the media re reflux

This is an open letter to the media in the hope that someone will pick up this story. Please circulate to any newspapers you think may publish this story.

Reflux mums please post your stories/experiences in the comments below. I'd love to get some of your first hand experiences written down to back this up!

To whom it may concern

I am writing in the hope that an editor for the health section of your newspaper may pick up this story. I am one of a huge number of mums who cope with an extremely difficult yet surprisingly low profile infant condition, silent reflux. A large number of reflux babies are misdiagnosed by GPs as having "colic" which can lead to months of pain and screaming, tube feeding, medication and like in my case, severe feeding issues. The real story here is the ignorance of health professionals regarding this problem and the massive disparity in support and treatment depending on your postcode. Reflux (where the child's stomach acid is not contained in the stomach and is either vomited or regurgitated and swallowed back down without being sick, causing massive pain, feeding aversions, scarring, aspiration and breathing problems in severe cases) sometimes goes hand in hand with CMPI (cows milk protein intolerance) requiring hypoallergenic milk formula on prescription. Mums with reflux babies are being told by GPs that this prescription milk doesn't exist, or are being prescribed insufficient amounts of formula to feed their babies because it is too expensive. I have numerous accounts to hand of mums who have had to go online to beg for spare cans of formula, or buy cans themselves at £15 a 400g can (which lasts about 2 1/2 days) just to prove to GPs that their child's reflux and pain is due to CMPI and that prescription formula is indeed needed. One woman had to take the can into the surgery and show it to the GP to prove it existed before getting it prescribed!

I would really love to raise awareness of reflux so that new mums can spot the symptoms early, can go to their GP armed with the facts and prevent the situation I myself am now in. My daughter is 10 months old, refuses to drink any milk awake due to pain related feeding aversion (I have to feed her in silence in a dark room while she's asleep every bottle meaning I've been house bound for 10 months) and still isn't eating solids after weaning for 5 months. So many of the mums I've spoken to are having counselling for post natal depression, going through divorce due to the pressure its put on the family and are at breaking point due to this awful condition and are not getting enough support from the NHS.

I'd really love to speak to someone about getting an article about this in the newspaper if possible and have several mums who would happily give quotes/case studies/first hand accounts of the hoops they've had to jump through to be taken seriously by their GPs.

If this is something someone would be interested in writing about please let me know.