Parent resources

Behaviour in CHARGE

Behavior in CHARGE syndrome, 2017
By Timothy S. Hartshorne

This article addresses how pain, sensory issues, and anxiety may impact the behavior of individuals with CHARGE syndrome, and how the development of self-regulation skills might help to mitigate some of the behaviors.

Tube feeding

• Virtual education videos available on the AusEE website.

• The Blend - a magazine-style resource for people who are new to tube-feeding. It shares stories, tips and recipes from parents, and professionals in the tube-feeding space. Read it online or request a hard copy on the contact us page of the AusEE website.

• A Consensus Statement on blended tube feeding offers evidence-based guidance for clinicians managing patients who are enterally fed.  Developed by an expert panel, this statement is an Australian & New Zealand first and will help guide nutrition professionals to support their patients and separate fact from fiction. 

• ChildFeeding.org includes info on what to expect in the early days, tips and tricks and short videos about tube feeding, to share with friends and family.