These articles are not necessarily specific to TN, but are good reads relating to the journey of chronic illness, chronic pain, illness in children, or being the parent/caregiver.  Some may help you understand your child better.  Hopefully some will resonate with you about your experience.

1. Why You Should Never Ask ‘Have You Tried…?’

http://www.huffingtonpost.com/lottie-v-ryan/why-you-should-never-ask-_b_6057062.html