https://www.ohbaby.co.nz/forum/ Copyright (c) 2006-2013 Web Wiz Forums - All Rights Reserved. Fri, 01 May 2026 02:58:54 +0000 Sat, 20 Sep 2008 19:55:29 +0000 http://blogs.law.harvard.edu/tech/rss Web Wiz Forums 12.05 360 https://www.ohbaby.co.nz/forum/RSS_post_feed.asp?TID=20830 https://www.ohbaby.co.nz/forum/forum_images/web_wiz_forums.png https://www.ohbaby.co.nz/forum/ https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=20830&PID=495758&title=does-anyone-have-any-info#495758 Author: ElfsMum
Subject: 20830
Posted: 20 September 2008 at 7:55pm

It's a bone disease.. barrel chest.. and his arms and legs slowly locking up with bone attaching to his joints basically..I haven't read the article yet but he doesn't have any cleft palate issues.. will read tomorrow:) ]]> Sat, 20 Sep 2008 19:55:29 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=20830&PID=495758&title=does-anyone-have-any-info#495758 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=20830&PID=494789&title=does-anyone-have-any-info#494789 Author: my2angels
Subject: 20830
Posted: 19 September 2008 at 1:17pm

What is it? I havent heard of it but noticed the article mentions cleft palates which is interesting.]]> Fri, 19 Sep 2008 13:17:06 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=20830&PID=494789&title=does-anyone-have-any-info#494789 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=20830&PID=494672&title=does-anyone-have-any-info#494672 Author: fire_engine
Subject: 20830
Posted: 19 September 2008 at 11:28am

Just found this website - don't know if it has info on SED Rare Disorders

ETA: if you go into the link "rare disease databases", and the emedicine, which you have to register for, it has a reasonable article on SED.

Edited by Flissty]]> Fri, 19 Sep 2008 11:28:30 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=20830&PID=494672&title=does-anyone-have-any-info#494672 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=20830&PID=488751&title=does-anyone-have-any-info#488751 Author: ElfsMum
Subject: 20830
Posted: 11 September 2008 at 3:40pm

thanks I will have a look later on! ...yeah we have an info sheet...i really dont like googling as often info is wrong.. and scary!:)the geneticist at the hospital really wanted to assess him and see him but he wouldn't go:(

we have the basics..and my Dad has a very mild form..but we have been told between 20-60 cases in the world when he got diagnosed in 1977 but I'm not sure how right that is.. sorry Flissty I wasn't trying to hurry you just wondering if anyone knew anything:) you never know... ]]> Thu, 11 Sep 2008 15:40:27 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=20830&PID=488751&title=does-anyone-have-any-info#488751 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=20830&PID=488729&title=does-anyone-have-any-info#488729 Author: fire_engine
Subject: 20830
Posted: 11 September 2008 at 3:22pm

Sorry - took me a while to answer your Q from the other thread. I've only read the stuff on google - haven't ever heard of it before. I'm trying to think of sources of info in NZ. Again the genetic counselling service comes to mind. One article (case study) that came up about cleft palate repair in SED was written by surgeons at the Hutt Hospital burns and plastics unit. It included an email for the lead author who might be able to connect you with someone who knows more. Article abstract.]]> Thu, 11 Sep 2008 15:22:30 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=20830&PID=488729&title=does-anyone-have-any-info#488729 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=20830&PID=488620&title=does-anyone-have-any-info#488620 Author: susieq
Subject: 20830
Posted: 11 September 2008 at 1:00pm

Could you google it]]> Thu, 11 Sep 2008 13:00:43 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=20830&PID=488620&title=does-anyone-have-any-info#488620 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=20830&PID=488380&title=does-anyone-have-any-info#488380 Author: ElfsMum
Subject: 20830
Posted: 11 September 2008 at 9:43am

does anyone have any info on

Spondyloepiphyseal dysplasia (SED) congenita

(follows an autosomal dominant' pattern of inheritance)
]]> Thu, 11 Sep 2008 09:43:16 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=20830&PID=488380&title=does-anyone-have-any-info#488380