My family and I have been asked by many people, for many different reasons, why we chose to pursue Microvascular Decompression for our daughter. Friends and family were curious and trying to understand this crazy journey we are on. TN friends and family are looking for information and to see if there is something to … Continue reading Why We Chose Microvascular Decompression (MVD)
We have had an amazing experience this week. We have a secret little corner of Facebook for parents of TN patients. We share info, ask questions, and sometimes vent at the basic wrong-ness of having a child fighting this beast. A couple of weeks ago, one of the families posted that they would be in … Continue reading The Power of Not Being Alone
In a very last minute coordination, we were able to arrange a follow up interview with Eileen Frere of KABC news channel 7 this afternoon. Tracy and Ang were both there also, so the interview was with all three of our TN Kids! To see the segment, check it out here. We are SO THANKFUL … Continue reading TNKidsRock the News!
I’m so sorry to be making this post. I’ve stopped several times and had to walk away. It’s hard to talk about the reality of the pain your child is going through. At times you develop a clinical distance from the emotional part of it, because you have to in order to get through the … Continue reading The Pain Journal
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
Let’s talk about the first steps you need to take now that you believe your child may have Trigeminal Neuralgia. Thank you to Stacie for developing the initial list on this! I've added and augmented to create this post. Start keeping a Pain Journal There is an entire post dedicated to this, so I … Continue reading My Child has Trigeminal Neuralgia, Now What?
It is hard to give specific advice in this area because it will vary so much, not only age group to age group, but child to child. However, we want to do our best to give you some guidance based on what we have learned in our years on this path with our kids. They … Continue reading How Do I Talk to My Child about their Trigeminal Neuralgia?