Nurses General Nursing
Published Jul 31, 2003
mystc42
58 Posts
Hi everyone. I have heard about this rare disease through a friend of mine, who actually has a very close friend who is about to have a baby that is diagnosed with this. There has never been a child live pass the age of 5 with this, and even then they are struggling all the way through it. (From what I can find out) They are already planning the funeral for their first child, can you imagine!But its so rare that I can't find it in most of the books that I have and very few sites on the web. Does anyone have any info they can give me on it?? I would appreciate it. Thanks
shelleybelle
113 Posts
I've never heard of it, but did a search and found LOTS references - under a different spelling: Pfeiffer syndrome Type II
This is an excellent site - http://malattierare.pediatria.unipd.it/pubblicaMR/mr_dx_ing.asp?mr=272
Sounds horrible... good luck to your friends...
P_RN, ADN, RN
6,011 Posts
What a sad thing.
kids
1 Article; 2,334 Posts
Wow, I read thru the link and did a little searching of my own. I'm stunned with the grim prognosis. I've worked with some really severe Aperts kids, I'd think access to a good cranio-facial hospital would be able to offer a lot of hope for quality of life for this baby.
Are they in an area where this is an option? Check out: http://www.faces-cranio.org/
other links:
http://www.icondata.com/health/pedbase/files/PFEIFFER.HTM
http://www.skullbase.org/pfeifer.html
http://www.diseasesdatabase.com/sieve/search_engines.asp?glngUserChoice=32145
Thank you guys so much for the post, they are helping. Just keep this family in prayer.