I have a 13 year boy. We have gone to countless counselors for problems but never a diagnosis. Going today once again for dr to get referral to nuerologist. to have brain scan don't know what else to do. Courious about your reseach. thank you.
: 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?
: Thanks before,
: --Previous Message--
: 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.
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