As you might be aware, RISA recently learned of the plight of a Tasmanian family who’s battle to find effective management of their 3 1/2 year old’s health issues was getting them no where. Tasmania has no paediatric gastroenterologists and this case is complex because it involves not only gastro issues but significant, repeated (and possibly related) respiratory issues.
One of the lesser known (and obviously less frequent) consequences of severe gastroesophageal reflux disease (GORD) is the need to tube feed some children. Babies can learn very quickly that the act of feeding hurts and as a result will refuse to feed. Despite the notion that feeding should be instinctual, there are some instincts that take precedence, like preserving oxygen flow or avoiding pain.
Welcome to the last edition of RISA News for 2013. What a year it’s been!
A few things in the past few weeks have prompted me to share this part of my story. The story of my child’s journey with reflux is published elsewhere on this website and I am aware that most of the time our personal stories focus on the child.
This one focuses on me. My daughter had a rough, rough ride. No doubt about it. But the impact on me was also tremendous. Most reflux mums know what I mean.
This page is intended to provide some ideas for family and friends as to how they can support a family caring for a baby or child with reflux. Over time, we’ve collected a few ideas and listed some of them here to give you some practical suggestions. Attached is a letter to families and friends to help explain what’s happening and give ideas on how best to help.
Ella was a very much wanted baby who was our little miracle after assisted conception medication was taken and then a high risk pregnancy. Almost as soon as she was born she was crying and screaming for long hours.