RE: Trigonocephaly diagnosed in my 6 month old grandson

[Guest guest]

Vicki:I know that you miust be very upset and frustrated right now. *hug*If you haven't already, please check out the Craniosynostosis and Positional Plagiocephaly Support Group (http://www.cappskids.org/ )They have support boards for different types of fused sutures. You have to join before you ask a question (it's free). Maybe this can help you find local support as well.Take care.mom to Quinn, born 11/99, DOCband graduate for scaphocephalic (long/narrow) head shape 10/00.>------- Original Message ------->From : Vicki[mailto:vickiwahl@...]>Sent : 1/20/2008 10:24:52 PM>To : Plagiocephaly >Cc : >Subject : RE: Trigonocephaly diagnosed in my 6 month old grandson>>I know this isnt exactly the same thing but the picture of the little girl in the intro is just what my grandson looks like...The diagnosis was just confirmed last week and here I was worrying about the brain surgery he was facing and now we learn they can't operate because the suture of his skull running up from the nose to top of his head has already completely fused..as a birth defect they say which again is not quite the same as this group described but I can't find any groups and I am feeling so anxious and not sure the medical world is really saying or doing all they could for him..Everything I read is pretty scary as to complications of this...his brain growing in abnormal ways causing his head to be mishapened..possible problems with his vision and hearing...anything anyone knows firsthand would be greatly appreciated.For more plagio info

[Guest guest]

You might already know this, but trigonocephaly is a fused metopic suture. Just in case you hadn't been given that information.------- Original Message -------From : [mailto:tnt@...]Sent : 1/21/2008 6:55:41 AMTo : Plagiocephaly Cc : Subject : RE: Trigonocephaly diagnosed in my 6 month old grandsonVicki:I know that you miust be very upset and frustrated right now. *hug*If you haven't already, please check out the Craniosynostosis and Positional Plagiocephaly Support Group (http://www.cappskids.org/ )They have support boards for different types of fused sutures. You have to join before you ask a question (it's free). Maybe this can help you find local support as well.Take care.

BR>mom to Quinn, born 11/99, DOCband graduate for scaphocephalic (long/narrow) head shape 10/00.>------- Original Message ------->From : Vicki[mailto:vickiwahl@...]>Sent : 1/20/2008 10:24:52 PM>To : Plagiocephaly >Cc : >Subject : RE: Trigonocephaly diagnosed in my 6 month old grandson>>I know this isnt exactly the same thing but the picture of the little girl in the intro is just what my grandson looks like...The diagnosis was just confirmed last week and here I was worrying about the brain surgery he was facing and now we learn they can't operate because the suture of his skull running up from the nose to top of his head has already completely fused..as a birth defect they say which again is not quite the same as this group described but I can't find any groups and I am feeling so anxious and not sure the medical world is really saying or doing all they could for him..Everything I read is pretty scary as to complications of this...his brain growing in abnormal ways causing his head to be mishapened..possible problems with his vision and hearing...anything anyone knows firsthand would be greatly appreciated.For more plagio info