Hi, I'm a genetic researcher currently studying pierre robin syndrome patients.
Our lab has recently found a candidate gene for this syndrome, and would like to gather more patients for screening of this gene.
It will be beneficial for future therapy.
Do you know where can we gather volunteer for this study?
: 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??
: --Previous Message--
: My daughter is 14 with PRS and suffers from
: variety of mental problems from adhd, bi
: polar and oppositional difiance disorder. I
: was wondering if any other PRS children have
: been diagnosed with similar issues? Just
: trying to find some root that might give us
: some direction for her future. Thank you.
« 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.