Laurie, I have a 6 year old granddaughter that I have raised since birth, She has PRS, and has major medical problems. She has also been diagnosed with Episodic Rage Discontent. It started when she was about 3 years old. Finally going to be able to see a geneses dr in a few months and hopefully will get some answers. Jessica has pulled out her trach or her G tube, puled out fists of hair, bites and generally will hurt herself or anyone around her. She is on Abillify, and Trileptol, and I also have valium for her when she has a major episode. Jessica was just a case study patient at our local childrens Hospital and that is why now we may finally be getting answers. They have not wanted to diagnois her with BiPolar due to her age. I was also given Chloral Hydrate, what they give you to put you to sleep for surgery but never used it with her already having a comprimised airway to start with. Does your daughter take meds and if so what?? At the case study they told me that they really had not heard of any children with PRS having the mental issues that she has. We live in Virginia, where are you at??
« Back to index
If you would like to join our email group, please check out our home page at www.pierrerobin.org and follow the instructions there. We would love to have you.