Home  :  About the procedure  :  Locations  :  Message forums  :  Photo albums  :  Stories  :  Links

VEPTR Forums
VEPTR Forums
Search | Statistics | User Listing Forums | Calendars | Albums | Skins | Language
You are logged in as a guest. ( logon | register )

Just wondering
Jump to page : 1
Now viewing page 1 [25 messages per page]
View previous thread :: View next thread
   VEPTR Sites/Hospitals -> UKMessage format
 
suzanne
Posted 2005-11-25 5:03 AM (#16416)
Subject: Just wondering


Regular

Posts: 65
2525
Hi everyone, i was talking to Samuel's genetic specalist about the diagnosis and a question that was answered got me thinking he told me that because Samuel has hearing, eye and spinal problems then a diagnosis of oav is concluded and that it was just one of those things that happened when he was growing in the womb as all his parts affected are more or less developing at the sametime. however this diagnosis is not 100% because he doesn't know where the lung condition sprung from. I'm just wondering there for how many children actually have veptr along with some form of facial disfigurement.
Thanks
Suzanne
Top of the page Bottom of the page
Sally
Posted 2005-11-28 7:01 AM (#16426 - in reply to #16416)
Subject: RE: Just wondering


Hi Suzanne,
Have been reading a few of your posted messages and just thought that I should let you know that our son Freddie had his VEPTR fitted by David Marks at the Birmingham childrens hospital 2 weeks ago. We were originally under a guy at Stoke on Trent (where Freddie was born) but a friend gave us Mr Mark's name and we've never looked back. In our experience he's absolutely brilliant. He did a growth arrest on a hemivertebra back in February and then this recent op. Him and his team are based at the Royal Orthopaedic hospital at Sellyoak. Let me know if you want any more information. My email is segerton@dow.com
Sally
Top of the page Bottom of the page
Rhonda
Posted 2005-11-28 9:04 AM (#16427 - in reply to #16416)
Subject: Re: Just wondering



Extreme Veteran

Posts: 308
100100100
Madi was born with a "crooked" face. I like to say she has character. Seriously, she has won a ton of photo contests because her face is "different" and, of course, beautiful. She also has some severe eye issues: severe cataracts and very near sighted... teeth issues are beginning now that her big girl teeth are coming in (she is eight). I cannot help but think these are all related, although no one has ever said as much in a direct manner. Hope this helps! Rhonda
Top of the page Bottom of the page
Jubi2U
Posted 2005-11-28 4:50 PM (#16439 - in reply to #16416)
Subject: RE: Just wondering


Lizzy was a very scarry looking baby. She had an eye on her forehead! They said her mandable was missing and she would "need some work". We put a helmet on her when she came home from Guatemala, although the doc said it most likely would not work because she was older than when they usually do it. It worked like a charm and now she looks great. Oh, and her mandable looks just fine. Her face was just soooo asymetric, but now as long as we keep her hair long you can't tell her head looks funky.
Top of the page Bottom of the page
Zoes Nana
Posted 2005-11-28 4:56 PM (#16440 - in reply to #16427)
Subject: Re: Just wondering



Expert

Posts: 3970
200010005001001001001002525
Location: Plymouth, Pennsylvania
DEAR SUZANNE,
ZOE ALSO HAD HEAD AND FACE ANOMOLIES...
SHE USED A HELMUT FOR ABOUT 18 MONTHS, AND IT MADE THE WORLD OF
DIFFERENCE...
SHE THOUGH, STILL HAS A HEAD SHAPE THAT IS A BIT DIFFERENT AND
ALSO HER FACE IS UNIQUE, BUT BEAUTIFUL...
ZOES DX IS VATERS/VACTREL...
ZOE ALSO LIKE RHONDA MENTIONED HAS TEETH ANOMOLIES, ASSOCIATED WITH HER
SPINE ANOMOLIES...

GOD BLESS...
Top of the page Bottom of the page
Guest
Posted 2005-11-28 5:55 PM (#16442 - in reply to #16427)
Subject: Re: Just wondering


Rhonda - 2005-11-28 9:04 AM
all
Madi was born with a "crooked" face. I like to say she has character. Seriously, she has won a ton of photo contests because her face is "different" and, of course, beautiful. She also has some severe eye issues: severe cataracts and very near sighted... teeth issues are beginning now that her big girl teeth are coming in (she is eight). I cannot help but think these are all related, although no one has ever said as much in a direct manner. Hope this helps! Rhonda
Top of the page Bottom of the page
Guest
Posted 2005-11-28 5:55 PM (#16443 - in reply to #16426)
Subject: RE: Just wondering


Sally - 2005-11-28 7:01 AM

Hi Suzanne,
Have been reading a few of your posted messages and just thought that I should let you know that our son Freddie had his VEPTR fitted by David Marks at the Birmingham childrens hospital 2 weeks ago. We were originally under a guy at Stoke on Trent (where Freddie was born) but a friend gave us Mr Mark's name and we've never looked back. In our experience he's absolutely brilliant. He did a growth arrest on a hemivertebra back in February and then this recent op. Him and his team are based at the Royal Orthopaedic hospital at Sellyoak. Let me know if you want any more information. My email is segerton@dow.com
Sally
Top of the page Bottom of the page
Jump to page : 1
Now viewing page 1 [25 messages per page]
Jump to forum :
Search this forum
Printer friendly version
E-mail a link to this thread

(Delete all cookies set by this site)
Running MegaBBS ASP Forum Software v2.2 PR 1
© 2002-2005 PD9 Software